Hey guys, Miggy here. As many of you know when I don’t have a current spotlight I post one from the archives and today I was thinking about sweet Lincoln. His original spotlight was in October of 2011 (one of my very first ones!), but he passed away unexpectedly in March of 2012–5 years ago this month. As a special tribute to Lincoln and his family to know that he will always be remembered I wanted to feature his story again today. XO
My name is Joie and I am the mother of two beautiful children. I am also the wife to a man of incredible acceptance, patience and love. Though I have a Masters Degree in Special Education, have worked in the field for over ten years, and absolutely love my job, I never wanted a child with special needs. I never envied those families, no matter how life-changing their experience was or how blessed they felt for raising a child with special needs. But in all those years of working in the area of special education, I never realized that I would love my child no matter what! I learned this the second we knew something was different with our baby boy, Lincoln, who is now 19 months old. In the beginning of life Lincoln struggled to gain weight, had significant acid reflux, sleep apnea spells and eventually needed an NG feeding tube due to aspiration (which is where he wasn’t protecting his airway when he swallowed so liquid was getting into his lungs). Next, we learned from an MRI that his brain had some abnormal and delayed growth (delayed myelination). That was a lot to take in; yet again the doctors told us they didn’t really know what that meant for Lincoln’s development. At 3 ½ months old Lincoln was diagnosed with a chromosome abnormality. He has a partial deletion and duplication on chromosome 1 (more specifically 1q21.1). However, doctors are still not convinced that his significant developmental delays are solely from his chromosome abnormality, and continue to search for a more definite reason, explanation or specific syndrome for his challenges. So now I am the mother of a child with special needs and I love this child so much I wonder sometimes if my heart will burst.
Miggy: Can you take me back to the day you knew your son would be classified as having special needs? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Joie: I remember the day perfectly. We had been waiting weeks for his genetic tests to come back and the day finally arrived when I got the call. The doctor was very matter-of-fact and didn’t explain the findings very well. He just said they found a partial deletion and duplication on chromosome 1, and they didn’t know what this meant for his future or development and to please come back in for further testing. I was at work when I got the call, working with other children who have special needs, and I wanted to crawl under my desk. At that moment I remember fearing that my heart was going to break and that I’d be sad forever.
I’m happy to say I’ve come a very long way since that day. I have accepted Lincoln for who he is and feel so lucky to have such an amazing husband and family that surround me daily, who love Lincoln exactly the way he is, and are OK with this challenge. We’re adjusting to our new ‘normal’ and now see the incredible blessings we have received by having Lincoln in our life. My 5-year-old daughter is my number one example of unconditional love and reminds me that everything will be ok! My sad days are farther between and although Lincoln can’t talk yet I swear sometimes he looks me square in the eyes and says, “Mommy, I’m ok and happy! Thank you for taking care of me even if I wasn’t what you planned on or expected!”
Miggy: Can you explain how Lincoln’s specific needs affect your day-to-day life?
Joie: Right now Lincoln receives a lot of therapy and has many doctor appointments so much of my time is spent taking him to those. He also does not yet eat solid foods well and has to be fed by bottle or by a spoon when taking pureed foods. He has very few independent skills so he’s much like a 6-month-old baby still. It can be physically and emotionally exhausting at times but again, Lincoln always lifts my spirits. He is the most easy-going, happy, mellow, and content child. He makes me feel at peace, even during stressful times.
Miggy: What are the biggest worries you face for your child?
Joie: My husband would say I worry a lot! I worry that Lincoln won’t develop the right skills to someday be more independent, and to help make his life easier. He is not yet crawling, walking, talking or really eating anything aside from purees. He has a hard time controlling his body and movements so I worry about the use of his hands and wonder if he’ll ever color me a picture or be able to use a fork and spoon to feed himself. I also worry about him becoming more independent, as his progress right now is very slow. With my education I know too much, which is a blessing and a curse, all at the same time.
As he is getting older, and bigger people are starting to notice him more because of the unique way he moves his body. He does not move like a typical 1 ½ year old, since he has low muscle tone and very poor motor planning skills. And so people are starting to stare, when he rolls his wrists or kicks his feet continually. This is definitely a whole other issue that I have had to start dealing with.
Miggy: Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Joie: Since Lincoln is only 1½ years old I’m sure we have many years of funny experiences ahead of us. He throws up a lot so we have had many experiences where he has ‘chosen’ to throw up on us, when it is definitely not convenient. Usually this results in complete wardrobe changes for all of us. And so all we can do is laugh.
Miggy: How can people best approach or respond to your child? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Joie: I just want to be open about Lincoln’s disability. I hate feeling like there is an elephant in the room and no one is talking about it. If someone sees him and wonders why he’s moving his hands or legs funny, just ask. Don’t stare and wonder what’s wrong. I’d much rather explain Lincoln’s challenges than for people to just assume he’s strange or moves funny.
Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?
Joie: Oh wow! There are so many. Lincoln has already taught me more in the 19 months he has been in my life than I’ve probably learned in 30+ years. While working as a special education teacher, I always tried to have compassion for the families I worked with, but I had no idea what they were really going through. And now I do! I’ve gained a tremendous amount of compassion and sympathy for the families I work with. I get it now. I understand why the parents I work with are often a bit intense, sometimes demanding, and have a different out look on life. I get it. I’m now that parent.
Doctors are unsure of Lincoln’s future so we’ve learned to slow down and enjoy life one day at a time. We get out of bed every morning and celebrate each and every milestone he makes, every smile he gives us and every giggle we hear from him. And suddenly the things that seemed important in life before are not so important now.
I know Lincoln is in our lives to teach us much more than we will ever be able to teach him. And I feel so very blessed to have him as my son. He brightens my day and although I of course wish things could be different, I wouldn’t change a thing.
I want to thank Joie for sharing her sweet little Lincoln with us. Seeing his shining face just makes me smile. To read more about Lincoln check out Joie’s family blog here. What I love most about doing these spotlights is the love I feel for each one of these precious babies. There is something so amazing about our children, these vulnerable and valuable little people who teach us so much. So thank you Joie, and thanks to everyone who has participated so far.
