I would get so excited to find a blog or facebook page of someone with ALGS. I would read the posts of their experiences and feel happy that I found someone who understands what it is like. I too have now created a blog and a facebook page to help friends and family keep updated and informed. I hope that they do not end the way most of the others end, with the last post beginning with "we are sad to announce the death of...".
Feelings of gladness to fine another to feel connected too will to often change into tears and sadness because they are already gone. If you don't want to cry, word to the wise, DO NOT watch the You Tube videos. If you do, you will need a box of tissues, the whole box of tissues.
To you mothers and fathers reading this letter in the middle of the night, to you I say Welcome. Welcome to the 2:00 am Alagille Syndrome research club. Others have sat here before you. Some who have gone thru this, and others who are still going thru this. Veterans and rookies. I have found that most are happy and eager to share with you and help you. Those phrases like: "the more the merrier", "safety in numbers" and "misery loves company" begin to take on new meaning. They also seem to mark the path, first you find yourself happy that you are not alone, then safe in the fact that you are not alone, and last that you are not alone in your grief. It is an instant and forever bond that seems to form between ALGS families. If you have not visited the Alagille Syndrome Alliance website, go to it, it is a great place to connect with others. To those who brought this site about and keep it going, Thank You.
As for now, I find myself still drifting, not really knowing what to do next. Our journey has just begun. Questions still pile up, confusion on what to do still frustrate me, sadness still creeps in. I hope that this account of my feelings and experiences will serve as a comfort to someone. Even if it is just to say, No, you are not crazy, and you are not alone.
I have found that "normal" no longer exists. When your child gets sick it is "normal" to take them to the Doctor, but which Doctor do we go see. Do we go to our "regular" doctor, who we see less than our specialists, or do we call a specialist? Is it a virus that will pass, or is it something more serious?
My 4 month old son was vomiting for 2 weeks. After a few trips to the pediatrician, GI specialist and emergency room to get rehydrated, I learned one thing, YOU must speak up and stand firm for your child. Don't be surprised if you find that the ER Doctors have never heard of Alagille Syndrome and hesitate before treating you. Don't be surprised if your Doctors don't always agree on what actions to take. One may say to use a certain formula mixed a certain way, and another may say that they don't agree with that. One may think that you have a virus, and another may think you have an allergy to your formula or a medication. It is enough to drive you crazy. Be patient, you are all in this together, and everyone has your child's best interest at heart.
I have found that our Pediatrician has never had a patient with ALGS, and he is a member of the 2:00 am ALGS research club. It is nice to know that he wants to be better informed on how to help us. He referred us to the best hospital and the best doctors. We have a great team of doctors in our court now, who I pray do not get sick of my phone calls and questions. We are so lucky and blessed to have the team of doctors and assistants that we do, and a fantastic children's hospital.
To our Doctors, new ALGS friends, our family and friends old and new, Thank you. Thank you for helping us, for giving us support, and for helping us find our new normal. Thank you for understanding when family events get missed, when conversations are all about ALGS, or I blame my sleep deprivation for the reason I forgot your birthday. Thank you for not laughing at the sticky notes on my fridge reminding me to not forget to pick the kids up from school again. Thank you for bringing us meals, and hugs, and more meals and more hugs. And a very special thank you to my wonderful daughter, for always being my last minute babysitter.
To all those who want to help but don't know how, lots of opportunities are on the way. I am planning some ALGS fundraiser/awareness events, and will be writing a children's book about our Little Alagille Monkey. Please feel free to make donations to Jackson's care or to the Alagille Syndrome Alliance information on how to do this will be posted soon. And please start to spread the news about ALGS so that we can raise awareness and get the community involved. Thank you.
