My name is Erica and my youngest son, Alex, is three and a half. He has a very rare genetic condition; he has a duplication on his 4th chromosome. There is no syndrome or name for his genetic condition. In fact, many doctors have tried to find a similar case and Alex is the only one with this specific condition. This is wonderful in many ways because it means there’s no limit to Alex’s potential and he gets to show us what he can do without any specific labels. On the other hand, it’s tough because we don’t know what issues we’re dealing with or looking for until we run into trouble. There are no support groups for this specific condition and we don’t have anyone to watch to have an idea of what the future holds. But all of this has freed Alex and our family to simply enjoy each day knowing Alex will show us what he’s ready for. We are so blessed to have a big and very loving family who surround us on this journey.
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Miggy: You knew pretty quickly that something was not quite right with Alex’s development, but at what point did you really know how serious it was and that Alex would now fall under the category of special needs? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Erica: Since we knew from the first week of Alex’s life that he has a genetic condition, I knew developmental delays would be a part of our story. We have been considered “special needs” since Alex was in the NICU. A lot of very well meaning friends and family tried encouraging me by hoping there would be no issues but a mom just knows; I knew in my heart that Alex’s path would look different from the day the geneticist walked into my delivery room. Even though I knew that and had a medical diagnosis, I didn’t realize how much fear I carried about what those delays would mean. I was scared of the “special needs” label. What would I miss out on experiencing with Alex? How would the world treat him? Would Alex develop to a certain point and just stop? I’m not sure at what point I started to find peace with those fears. Now that Alex is getting older and can show us more and more of who he is, I worry less. I see how his personality, determination and constant state of curiosity overcome all of his delays and I know that his joy and happiness will be what carries him far in life. I used to rock Alex and pray that as his mom, I would see him smile and hear his laughter; it’s those two things I needed from him. I wanted to know that he knew me, any other delays I could handle. He has given me that and so much more and that makes me one happy momma!
Miggy: Explain how Alex’s specific special need affects your day-to-day life?
Erica: Well, I’m so used to living with our differences that as long as we’re home, I don’t see them much anymore. In many ways, I do feel like I still have a baby. I feed him, change his diapers, use a stroller, carry him, brush his teeth, dress him… I feel the effects of Alex’s special needs more when we’re out in public or around children his age. People are kind and offer him treats and I have to explain he isn’t eating yet. People will ask him questions and I have to explain he isn’t talking yet. Alex has a g-tube so feeding him in public really highlights our special needs. He can’t eat cupcakes at birthday parties, isn’t able to eat off of the children’s menu at restaurants, can’t eat the Halloween candy or enjoy ice cream from the ice cream man. I guess the eating issues affects us in every day life and socially more than anything else. I’ve gotten to the point where I don’t remember life without special needs but then there are the days when I feel like our family is now so different that I don’t know where we fit in and I’ll just have a day of being sad.
Miggy: What are the biggest worries you face for Alex? Additionally, what are some of the triumphs you hope for?
Erica: My biggest worry for Alex is how others will treat him. I’m so afraid for him to experience a hurtful comment, mean laughter or people who will only see his differences. I’m afraid of the labels that will be placed on him. I worry that he will be so trusting and open to the world and it won’t have a place for him, that he won’t get back the smiles and laughter he gives out. I don’t worry about him physically. I know that he will continue to grow and learn new things his entire life and there isn’t a limit to what he will do, when he’s ready.
The triumphs I hope for… I could sit here all day and list those! When it comes down to it, I want him to be able to accomplish every thing that is important to him, not what our world says is successful. I want him to keep his joy and contagious laughter. I want him to always face life with confidence. I want him to have peace about who he is, knowing he is made just as he was designed to be. I want him to find true friends, experience love and have deep relationships with those who love him.
Miggy: Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Erica: We’ve learned to find the humor in a lot of situations so I feel like every day we have something to laugh about! Hearing my six year old use the words, “bolus”, “extension” and “g-tube” has really shocked some people and that makes us laugh. Alex loves to take his pants and diaper off so looking over at the mall play area to see your son’s cute baby cheeks crawling around gives us a good laugh, after the initial horror! 🙂 One of my favorite moments was when we were at the mall play area and Alex was an infant. I sat down to feed him with his g-tube and before I knew it, I had six or seven children sitting at my feet, watching me feed Alex and asking questions. It looked like story time! The mothers were so embarrassed but after reassuring them I didn’t mind, it was a very social and fun lunch time for us!
Miggy: How can people best approach or respond to Alex? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Erica: When it comes to approaching us, I’d always rather someone just ask. I’ve had so many kind people ask about Alex’s g-tube or his delays and I’ve found that to be so much better than people who just stare. The staring hurts the most because my insecure mommy mind comes up with thoughts I’m afraid they’re having about my son. When people stop to ask me about Alex, they are almost always sure to get a smile, high five or even a hug; I like when others get to experience a moment that helps them to see past his special needs to the wonderful little boy he is!
I also have found how important it is for people to acknowledge my older son, Charlie. Sometimes people ask about or give a lot of attention to Alex without doing the same for Charlie. Charlie is just as important and special of a little boy and he knows just as much about Alex as we do! He loves to answer questions or is just proud to be seen as the amazing and one-of-a-kind big brother he is.
Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?
Erica: Gratitude and trust. I’ve learned to be grateful for everything God has given me in life. I try to take nothing for granted and have learned that even the toughest situations are full of beauty. I’ve learned to trust my instincts and the things I know to be true in my heart. I never knew on the day Alex was born and my world felt like it had fallen apart, that I had just started on a journey that would bring me more smiles, laughter and love then I ever knew existed. For that I will always be grateful.
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Thank you so much Erica! Didn’t you all just fall in love with Alex? I did. The picture of those two sweet brothers melts my heart. Additionally, I one thousand percent agree with and love what Erica said about big, brother Charlie! He is amazing and special and deserves just as much attention…I know I have often felt that way with Princess Sparkle. I’m grateful that people are so kind to Lamp and want to single her out with positive comments, but I often worry that PSP feels ‘not special enough’ sometimes. We could probably do a whole series on siblings of special needs kids! Thanks again Erica. It was a treat to share your Alex and the rest of your family with us.
Remember, if you know someone who would make a great spotlight please email me at thislittlemiggy at gmail dot com. Have a great weekend!
What an amazing post! I'm the proud aunt of Charlie and Alex and extremely proud sister of Erica. Alex has brought so much dimension and joy to all of our lives I don't know what we would do without him. Alex gives me perspective on life in a way that keeps petty discontentment at bay…Thank you for this blog!
Loved your thoughts Erica…you are soooo much like your mom and yet have become your own beautiful person. How proud I am that I have known you and now see this. Out of the ashes rise the most rare and beautiful things and this is personified in you and your sweet family. As you choose to set your feet upon God's solid rock may you daily be set free of fear and worry, as Christ resides in you~then you have already overcome! Bless you as you live out this special honor that you were chosen for…Alex and Charlie's Momma! xoxoxoxoxo Cindy
What sweet boys. I loved this post, thank you for sharing.
Thanks for these Special Needs Spotlights: more people to add to my prayers.
I look forward to these post every week. I find it "how to approach or respond to kids with special needs" helpful. But I don have a question, more specifically, how do I ask? I don't simply want to ask what's wrong with a child, it seems rude. I don't want to guess and likely be wrong. What is a polite friendly way to ask. I want my son to see that it's ok to special needs kids and play with them, but i'm not sure how to do it myself yet.
Alex is so cute. He seems so happy and loved! I'm so inspired! I love what you are doing, miggy.
Thank you so much for having Erica share Alex with us, Miggy! What a sweet smile he has. Erica, your cute story about the kids gathering round like it was story time when you were feeding Alex made me smile. I have a special needs son, too, and sometimes you just have to smile at things you never expected to experience in life, don't you? Keeping a sense of humor when times are tough has been really important with my husband and me. How great that special Alex has his special big brother Charlie who will be by his side throughout his journey in life!
Writing on this blog has been such a treat for me! I'm so inspired by Miggy and her family, as well as the other families featured in the spotlight. Thank you for such kind comments! My boys have taught me a lot and I feel so blessed to be their mom. Sam Adams, I wanted to answer your question… Often times something simple like, " do you mind if I ask…" and then your question is a good way to begin. It gives the parent a chance to answer or explain why thy don't want to discuss their child. As for other children, I don't think you need to do anything unless your kids ask. I'm amazed at how accepting children are of differences! We as adults worry about the obvious differences, not the children. As Charlie explains to his friends when they ask, " Alex is different just like you and me. We have different colors of hair and shoes! We're different and so is he!" Hope that helps! 🙂
Could Alex be any cuter? Seriously!!! What a beautiful smile he has and you can just see his bright countenance he holds!
PS Hello, my name is McKinley and I went to high school with Aarika. I think she is pretty spectacular. Anyways she sent me your link because my sweetest little niece was born with an incredible rare chromosonal defect called Cri du Chat a.k.a. the cat cry, 5P, -5p. It is a deletion of the fifth chromosome. I have added your blog to my blog roll on my blog that is specially made for special needs blogs or other heart wrenching stories.
I look forward to reading your blog!!
Hearts,
McKinley