Letter from a Mother
My husband, Wolf, and I are so excited about our adventure with the No Stone Unturned Foundation. We shared a dream and are blessed to see it to fruition with this foundation. Let me tell you a bit about our inspiration…
Wolf and I knew from day one that we were meant to be together. We both had similar dreams, ideals and goals. We both love children. After we got married, we didn’t waste any time and got pregnant right away. We weren’t so fortunate with our first go around, but kept the faith and tried again. We were blessed with a beautiful baby boy. I will never forget that magical feeling and watching Wolf with his baby. He was so proud. We named him Stone. We had no idea how much our little “rock” would rock our world! It started with his neck; he was diagnosed with torticollis-inability to move his neck. We sought medical treatment and began therapy right away. Then we noticed that he wasn’t tracking correctly. Doctor after doctor, we couldn’t find an answer. Stone had difficulty feeding. He seemed to be eating, but was not gaining weight. We went from nursing to formula. We tried every formula known to man, it seemed. His 3rd pediatrician noticed a heart murmur so we went to a cardiologist and he was diagnosed with a heart condition known as Pulmonary Stenosis. There were vision concerns, so we were referred to a pediatric opthamologist, he did not have much vision until he turned 6 months old. He did not meet his developmental milestones for social smiling, sitting and then crawling. Every time I would take him to a doctor for one concern, I left that doctor’s office with more.
There were just no answers and many times I felt like the doctor/specialists were not “listening” to me. I began to do my own research and started working with Stone myself. With 14 years of experience as a school psychologist specializing in neurological disorders of childhood, I thought I could handle the situation and figure it out.
I contacted the best of the best in every delay area noted and started implementing some of the therapies that I found. I made a referral to the early childhood interventions and requested assistance through their programs. Meanwhile, the doctor’s appointments continued. By the time Stone was two he had received OT/PT/Speech/Developmental Services/Chiropractic services/Craniosacral therapy and helmet therapy and had seen over 40 specialists. Among those specialists were cardiologists, opthamologists, GIs, ENTs, surgeons, dermatologists, allergy specialists, developmental specialists, geneticists, hemotologists, and neurologists… No one had answers. Finally at one of the cardiology checkups, Dr. Albers suggested Noonan’s Syndrome. And thus a new journey began.
Realizing that something is “wrong” with your baby is traumatic. Finding out week after week that there are more medical issues can be paralizing. I was looking for answers and running into brick wall after brick wall. I beat myself up for using splenda in my tea while I was pregnant… and, oh, there was that time that I got food poisoning from eating bad turkey… how could I have eaten that… why did I take that chance. Then I was just angry. I did everything RIGHT in my pregnancy. I ate right, avoided ANY food or drink that is on the “list” and walked regularly. I didn’t even let myself breathe hairspray. Being a missionairy’s daughter, I then decided that God must be punishing me for something. The stress was overwhelming and Stone was still diagnosed with “failure to thrive”. We continued the therapies and doctors appointments.
After a number of genetic tests, we finally received confirmation of Cardiofaciocutaneous Syndrome (CFC Syndrome). It was interesting. So many of my close friends and family said, “You must be relieved.” To be honest, I was mortified, I was horrified and I was devastated. Any hope left that my baby would “grow out of this” was shattered and now I had to live with the reality that his issues were not going away. I grieved again. My husband grieved again. We grieved together. Then something almost magical happened. We began to realize how blessed we really are. We started verbalizing to each other how much our lives had changed because of Stone and how very much we have learned throughout this experience. We have a completely new perspective on life. One day, Wolf said to me, “Has Stone been happy? Has he brought us joy? Has he changed our lives for the better?” The answer to all of these questions was, and is, a resounding, “YES”. Then my incredible husband made a profound statement. He said, “I will take every day that I can with him.” Well, that is that. Enough said. I will too!
Stone is a very special little soul. He appreciates everyone and spreads joy as if it is abundant. On our many trips through the hospital halls his little voice rings out to everyone we pass with a tiny, but very clear “HI”. He oozes cuteness and brings smiles to those we pass in wheelchairs, those in pain and some that just don’t have anything to smile about. He is such a blessing to us on so many levels and allows us to experience life on a plane that many will never know. We meet and experience people that we would have never had the chance to meet. We have learned lessons that could not have been possible without him.
Yes, Wolf and I know what life really is all about… we have it in our hands and we thank our God for giving us his precious angel for keeping. Stone is our Gift. Through him, we can be there for each other and take our relationship to a different place. We get to find out what we are really made of. Additionally, we can support families that must embark on such an unexpected journey. Because of Stone, our lives are sometimes more painful, but always richer, deeper and more fulfilling than we could have ever imagined.
We would like to invite you to join us in our journey to make differences in the lives of children and families who face the uncertainties that come when a child suffers from various health issues and don’t know which way to turn. We deeply feel that our Foundation, with your assistance, will truly leave “no stone unturned” in our efforts to change lives.