Five tips I wish I knew six years ago
Six years ago Jordan came into our world and changed our perspective on what it’s like to raise a little girl. I’ve said this many times, but I’ll repeat it again. I asked the doctors if Jordan was okay after we discovered she was born with one hand… I looked up into Randy’s eyes and we both repeated that fact: “She’s going to be okay.” We both immediately knew this was true. I had more complications than Jordan did in the time after her birth.
But that doesn’t mean I didn’t worry in the months after she was born.
She was the most beautiful baby from the moment she was born. People were drawn to her bright and beautiful eyes. I worried they would look away from her sweet face to gasp or say something rude about Jordan’s limb difference. I was jumpy and sensitive for her first six or seven weeks of life. Then I struggled for weeks after that trying to stop looking for people staring. I focused on my family and lived the life we live to show the staring people (if there are any, I honestly don’t look any more) that we are just like any other family.
I wish I could have told myself to let it go sooner.
If I was a new mom to a limb different baby, here are five things I wish I knew immediately after Jordan was born.
1. It’s okay to be sad. We all have an image of what our child will be like when he or she is born. We’re allowed to be sad.
2. Don’t let the sad run your life. Take the time to enjoy your sweet baby. The cuddly phase goes so fast. It’s the best… even if you’re sleep deprived.
3. Stop reading books and websites that tell you when standard developmental milestones take place. Your baby might hit those milestones differently. Also, he or she might come up with a way to meet those milestones differently. Make sure you have a team behind you: pediatrician, occupational therapist and physical therapist.
4. Reach out to the limb different community. It’s getting easier and easier to communicate with people online but the most powerful experiences are meeting other limb different kids and their families. Our first meeting was when Jordan was 32 weeks old. We haven’t stopped meeting with families since!
5. Answer questions honestly and in a positive way. The way you respond to questions in public teaches your child how to respond when he or she grows up.
I’m so proud of Jordan and how she’s growing like any other kid. She’s so excited for her birthday party later today.
Happy Birthday, Jordan! I love you!
Happy Birthday Jordan. You are an inspiration to every one every where (and your mom too).
I have a 14 month old foster child who I have had since he was 10 days old. (He was born with contracted arms with very tiny hands and only 1 finger on each hand) Isaac has also been an inspiration to me. He amazes me every day. What I would like to tell people (and I was told over and over again) DON’T WORRY!!!. I spent so much time worrying about how he was going to do things. He has taught me he can do anything on his own in own way. Do I still worry? Yes, but not so much.
Happy Birthday and have a great day!!!!
This is so true. My son Jordan was also born without his left arm just below the elbow like your Jordan. We had no idea until he was born. It was a shock and we shed lots of tears, but i looked past it more then my husband did. He was thinking alot about the, hows he going to do this an this an i kept saying he will fiqure out a way. I love to that i have met a great friend that has a boy the same age as my Jordan and he was born without his fingers on his right hand. It so helps to have support around you! I tell people now when they find out they are pregnant to be ready because its not always going to be what you expect. Happy Birthday Jordan! Have a wonderful day! You are a true inspiration!
Thanks for posting. In September, my daughter was born with a limb difference almost exactly like Jordan’s and it is encouraging to read your blog and see Jordan so happy! She is an amazing little girl! Happy Birthday Jordan!
Beautiful! We were lucky enough to do these 5 things when Oliver was (now 3) born, LBE. I had a mother who told me it was okay to be sad and that was the first step. The next 4 steps followed naturally for us with the help of all the limb different support groups, the internet (thank goodness!) and the fact that we already had a son (all bits) who was 20 months older and was the prime example for milestones reached… Oliver beat him on every one! Love this post!
Happy Birthday Jordan! I remember the day of your birth so clearly and I remember your sweet newborn picture. 🙂
Jen, this post applies to ALL of us with special kiddos. How I wish I had not stressed over these things so much (and STILL stress over them). I’m still not sure how to not let the sad ruin my life.
Love you, Heather
Heather, I love you too! I think the best way to not let the sad take over is to keep talking… sharing and finding friends to lean on. You’re doing awesome. I’m so proud of you. I just wish I lived closer to give you hugs in person.
[…] you didn’t see it earlier, I posted five tips I wish I had learned when Jordan was born six years ago. Share […]
Happy Birthday Jordan! I can’t believe you are already 6, I remember when you were born! You’ve brought so much love and fun to the newsroom and I miss seeing you all the time. Enjoy your Winter party little miss princess!
I completely agree with your comments. David was born without a left hand but he’s done marvelous. I’m so proud of who he is and what he’s doing on his own, I forget sometimes that he is limb deficient. Hope Jordan has a great birthday! Thanks for all you do in gaining limb deficiency recognition. 🙂
Happy Birthday Jordan. Jen thank you for your information. It helps alot. We do not have that support system so it is still hard for me at times. Thanks for being my cyber system: )
Terri, that’s exactly why I’m writing and sharing our life story. Please feel free to email me any time if you need to vent or have a question: jen [at] bornjustright.org
Happy Birthday Jordan! Its so fun to watch you grow (following the blog). We hope to meet up in the future as Jack would love to see someone with a special arm like his! xox
Thanks so much for posting! Hope you don’t mind if I share this, it’s all true! I wish I had found these support groups sooner, when my Meghan was first born!
Please feel free to share near and far Michele! That’s why I write my thoughts and lessons learned on this site! Happy new year!
Tommorow is new years day! Yay
I’m so glad I found your post. I had my second little one 12-12-11, she only has 3 toes on her right foot. Also that foot and leg are shorter and narrower than her left. Its been hard the past 4 weeks. I used to feel guilty about it because I thought I caused it and I’m just now comeing to terms with the fact it wasn’t my fault. When she was born it shocked us all because they didn’t see it on the ultrasound.
SO many times our kids’ limb differences aren’t seen on ultrasounds. I should have demanded I see every finger and toe during my one ultrasound… but I didn’t. I didn’t even know kids could be born with limb differences before Jordan was born!
Jordan is a beautiful and amazing little girl. Like Morgan’s little girl, my daughter was born with fibular hemimelia. She just turned 4 and she had a symes amputation done last July. Our children are an inspiration!
It’s wonderful to meet you Marnie. Our kids teach me so much… I’m honored to be a part of this invite-only world.
Just came across your website – my sweet Noah just turned 9 months this weekend & I wish I had these 5 things to remember when he was born (missing 3.5 fingers on his left hand)! Your Jordan is just beautiful and an inspiration to many! I was so scared and nervous when he was born but he’s doing great – beating his older brother (3) in some milestones lol! Keep up the great work!
Are all kids amazing as they grow. Congrats on little Noah. Please let me know if I can help in any way! Email me any time: jen [at] bornjustright.org
Thank you so much for sharing. I can totally relate to the 5 points you shared above. Our daughter Naomi is now 5. She was born with cerebral palsy. it affects her right side of her body, mainly her hand. It’s hard for her to grab & let go. It doesn’t affect her mentally. She is a miracle.
have an awesome day!~
You too Monica!! One of Jordan’s friends who has CP is SO SO bright. It’s incredible to see all the great things our kids can do.
[…] while back I wrote the five things I wish someone had told me when Jordan was born. I still stick by those. Also, I’m so glad I can be a resource for you. […]
I just came across this through a link shared on the internet yesterday, though I’ve been following your blog for the last two years! All of these points are awesome, but the one that struck me the most was #3. Having two other kids, I was still trying to track Maggie’s milestone development – not just to compare what she could do, but also to prepare for questions from the doctors. I remember at one of her appointments with the geneticist, we were talking about what she could do and she was behind on her gross motor skills, but then I mentioned something I thought insignificant – she can open cabinets and empty the contents with her feet – and the doctor said, well that is something kids 6-9 months older would be doing! That was really when it clicked for me that she is meeting all her milestones, just in her own way and in her own time.
It’s true, Erin! I was lucky to have a physical therapist who really helped me understand how Jordan was meeting all kinds of development milestones. It was just on her own personal timeline, not the ones they put in the books. Each time she hit one of those milestones in her own Jordan way, it took a little weight off my shoulders.
Great post. Success is simply different hereat my house than it is at my neighbour’s home. I learned fast to tune out everyone else and focus on my child when she was having any type of issue in public. I am lucky to have a thick skin. Comments from others around both of my girls have been rude at times and inquisitive at others. I just answer them as matter of fact as possible. I agree it teaches the child how to handle these situations by modelling good beahviour and honesty yourself.
What an absolutely adorable little girl! I am the mom to a 13-year-old with disabilities, and I thank you for sharing your story and also for providing this wonderful list! I love the name of your blog, by the way 🙂
Thank you for this. Our limb different baby is arriving sometime in the next 5 to 9 weeks and I needed to hear this.
You’re little one is going to be amazing. Please feel free to reach out anytime.