The Best Parts of 22q
I often feel really alone on my journey. My friends and family don’t quite understand. I know they hurt with me and understand parts of it, supporting and loving me unconditionally where they can, but never really getting the full picture. I think when you are actually living and experiencing it with no one around you that can fully understand, it’s lonely.
I am thankful for the Facebook groups where I can talk with other parents going through the exact same thing. Although all our children are unique to one another, we are on the same journey. It’s painful and terrifying at times but it is also rewarding and joyful. It’s so nice to be able to ask questions with no judgement, share each others victories and be there to *cyber* hug and to listen when we all need it, or for someone to just say, “it’s okay, I get it”.
22q can be overwhelming when you first get the diagnosis, especially with Google. My first thoughts were, how are we ever going to get through this and is my daughter going to be okay? I must remember 22q is just a diagnosis not something that defines my child. I asked some other parents what they find the best about their children who also have 22q11.2 deletion syndrome. I know the best part about it for me is that despite everything that Piper has been through she is always smiling. She has such strength and brings so much joy to everyone and she brings out the joy in me. I have discovered just how strong I am and how faithful our God is. Here are what the others had to say;
Claudia Bernier
“I’m new to this. But great health for me and my husband. Prior to being 22q parents we never really took care of ourselves in terms of Healthy eating, precaution during cold/flu season. Now we are forced to take good care of ourselves. Doesn’t seem like much but it feels good to feel good!”
Donielle Stile Morgenstern
“Josephine “JoJo” is one amazing, strong, beautiful, smart girl. She has struggled more than most 9 year olds or most people have in a lifetime However, she does not allow that to keep her from enjoying life to the fullest. How to receive joy out of life’s “small things” is something that JoJo & all 22qties have taught us. She loves to laugh & smile and it is ridiculously contagious.”
Stephanie Serff
“All the hugs and snuggles.”
Pauline Hoogkamer
“Our son Naveen does have the 22q features. In exams doctors call him dismorfic and its always hurt my heart terribly even when its used as a medical term. We also have 2 other childeren who look more alike each day and don’t have 22q. Especially my son is a handsome little fellow and my daughter is very cute too. Both do well, are well mannered etc BUT noone I know, not them, not anyone else’s kids have as many friends or are so instantly liked as our 22Q. He IS treated differently but not because people know he’s 22q. He jist makes them love him. He cuddles strangers (!) if he feels they’re sad, takes care of friends and the lonely child in a playground. Goes into shops to say hello have a nice day to shop owners etc etc. He has shown me beauty comes from within, and that’s what people see: your heart. Not your face. That makes him so special. ps his brother and sister are super in love with him too except that he has a party invite almost every weekend, and they don’t that is the only time it can give some friction”
Ashley Elizabeth
“The way my daughter has changed me. I’m actually a more positive person now than before we found out about her heart defects and 22q. I’m more appreciative, giving, empathetic, aware, patient, kind and the list goes on and on. I look for the good in people instead of focusing on the bad. I have learned to live in the moment…not always waiting for something big to happen. I’m such a better mother now…less frazzled during the day to day struggles because I’m just so thankful for my kids being here. At just 2.5 she has taught me all about life. In many ways she is wise beyond her years. She is so full of love, energy, and determination. I wouldn’t trade her for anything.”
Brandi Lee White
“I’ve learned so much, not just medical stuff, about life and who I am. My daughter is amazing person and inspires me daily to be a better person.”
Crystal Matney
“I know for my daughter. No matter what doctor she sees, what surgery she has, what struggles she faces, or if someone isn’t nice to her…she puts on that brave face with a big smile every day likes it’s a new day. They have a heart of gold.”
Erin Harris
“How awesome the milestones are when they are reached. I remember crying the first time Lily signed ‘Mum’ (who knows what I’ll do the first time she actually says it, probably faint or something!!), and I’m so excited that she lets me do her hair for kindy – 6 months ago she wouldn’t let anyone near her head! I love how empathetic she can be, especially with her little sister. And I’ve learnt just how strong I can be, and how strong her Dad can be, he’s held her through all of the horrible hospital experiences and held it together for her when I know he’s just tearing apart on the inside, and I love him all the more for it.”
Laurel Hineman Cogar
“Every milestone my granddaughter achieves – when she rolled over, sat on her own, crawled, pulled herself up, walked, signed to me for the first time (this past Monday), smiled at me after her surgeries, gets so excited that she squeals every time she sees me – the list goes on and on. She is a strong, independent, beautiful, loving almost 2 yr old that amazes me every day and reminds me that her diagnosis does not define her. Her love for me melts my heart and she can turn an otherwise humdrum gloomy day into a bright sunshiny one.”
Katie Savage
“Grace has such a pure love of life… she finds joy in the hardest of situations and spreads so much happiness to those around her. It’s been that way from the start and I pray it doesn’t change!!”
Sheri Kicklighter Hodge
“My 22q likes to cook and he feels calm and confident when in the kitchen.”
Danielle Thomas
“Every time my boys have achieved milestones is a big thing and so exciting. They both have 22q. My 14 month old just started crawling a few weeks ago and is now standing on his knees, and even trying to pull himself up to stand on his feet!! He is always happy and chatty, even when he is sick in hospital. My eldest is the kindest boy I have met and friendly to everyone, including strangers!! He knows all his shapes, colours, alphabet and how to count 1 to 30. I’m proud and love both my 22q boys. They have had their journeys and individual things to overcome. They have shown me how determined they are and to never give up. Eldest one has really come along with his talking now, he can express he is sad or if he is sick. Which he could never do before.”
Fladia wilbert
“I have no idea how strong we can be!!!! Its pricelles have a 22q, we are growing every day, learning, sharing good moments!!!! See her smile and her achievements is the best reward the parents can have!!!!! Proud parents of a 22q princess Julia Laura!”
Marty Wegehoft Dwyer
“My son is such an out-of-the-box thinker. He amazes me with his creativity!! The ideas he has leave me scratching my head….wondering….thinking…’What made him think of THAT?!'”
Nancy Jo And-Paul Loudner
“I found my own strength. I never knew how strong I could be until I had to be strong for my son. And we all found our strength in the Lord.”
Leah Scates
“They all amaze me. to go in and out of doctors and hospitals and stay smiling and positive. And some of the Drs are miracle workers. My husband is amazing with our 22q grandchild that we are raising. He is more loving and caring than he was with our children. I think he is in awe of what this little guy can do. Every little thing he does is so big really.”
Viri Mendoza
“When they finally reach a milestone is the best part. Its like all other things in life, because they come normal or with little effort we don’t celebrate the to the fullest. But when our lil 22 q-ties do accomplish anything, its appreciated to its fullest. Sitting up, grasping toys, eating all alone is a big accomplishment, crawling, walking , running and jumping. Signing or their first words. Potty training. Drawing and writing. Everything my boy has accomplished has been bigger than the struggles he has gone trough. The biggest thing of raising a special needs child is that it makes you the strongest person you can be. It transforms you to a more loving, tolerable, patient parent. Everything i am is all thanks to my warrior.”
Nina Houston
“My daughter is the barometer child in almost every situation. If she is grumpy, everyone is grumpy. But when she is in a good mood (Which is a more common occurrence once we knew how to help her, and started getting some answers), EVERYONE is in a good mood. She affects everyone around her without even realizing she’s doing it. So much charisma, and always positive about the hard things. She has taught me so much about patience and understanding.”
Melissa Dawn Frost
“Ethan surprises me with something new everyday…he is showing me here how to make a video game…don’t have clue what any of it meant lol He has the biggest kindest heart”
“My life is an example to many, because you have been my strength and protection”
– Psalms 71:7
I have no idea how strong we can be!!!! Its pricelles have a 22q, we are growing every day, learning, sharing good moments!!!! See her smile and her achievements is the best reward the parents can have!!!!! Proud parents of a 22q princess Julia Laura!
Thank you for your article and including my 22q. The other testimonies were such a joy to read! I as a 22q mom also have 22q. I see a common thread in our 22qs. God bless us all on our journey!
Hi Leigh, you might remember me from around school. My name is Angie Eddison- now Dawson.
I think you are incredibly tough to be parenting your daughter the way you are – how else would you but you deserve the recognition 🙂
I lost my son a few months ago, I was in hospital with him for only a week before he passed away.
I don’t know what it would be like to be in your shoes, but I understand the isolation you feel and I also know what it is like to have a sick baby when the world tells you it’s going to be fine sometimes it doesn’t actually feel that way (it didn’t for me).
So I just wanted to say hi, and that if you would ever like to chat I am here to listen!
Thank angie. I’m sorry for your loss, I couldn’t even imagine how that feels! Defiantly sometimes I feel like everything is against us. Xx