Friday, September 30, 2016

Special Needs Spotlight || Luke



Hello! I’m Samantha. My husband Justin and I live in Southwest Ohio, and we have three wonderful (and sometimes exhausting) children: Nate (5), Audrey (4), and Luke (20 months). Though “all babies are special,” I’d like to introduce to our youngest, Luke. Luke has multiple issues that contribute to significant developmental delays and is 100% feeding tube dependent, but he is the sweetest little boy and the center of our family.

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Miggy: Hi Samantha and welcome! I'm happy to be interviewing you about your special needs journey. Lets start at the beginning, can you take me back to the day you knew something wasn't quite right with your son? Was this before birth, immediately after, or sometime after that? How long did it take you to get a diagnosis? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Samantha: My pregnancy with Luke was completely typical. Since we already had a four year old and newly-minted three year old, I felt like a veteran. Knowing Luke would be our last baby, I prepared for that two-day hospital stay like it would be an all-inclusive resort. Ironically, I convinced my doctor to discharge me 6 hours after his birth so I could leave to join Luke at the local children’s hospital where he was undergoing emergency surgery.

Luke was a healthy, pink baby boy, but there appeared to be a bulge where the umbilical cord connected to his abdomen. It quickly began to fill with fluid and he was whisked away. Luke was stable, but he needed to be transferred a few miles away for immediate surgery with a doctor I had never met. Ultimately, it was discovered that he had an intestinal omphalocele – a portion of his small intestine was enclosed in a sac inside my umbilical cord. That sac was simultaneously his saving grace and the beginning of our heartbreak. During surgery, a tear/hole was discovered in a portion of his small intestine. Had the sac not enclosed this very section AND been outside of his little body, his waste would have actively leaked into his body cavity without our knowledge and been fatal. I say heartbreak because we also found out that this sac was considered a midline defect and pointed to numerous other possible birth defects--many of which Luke was diagnosed with in the coming weeks in the NICU. The NICU was a hard place to be. I was supposed to be home with my family, enjoying our brand new addition. Instead, we saw endless specialists, each beginning with questions of my prenatal care and then proceeding to document every defect in my “perfect” newborn. Each made predictions about what was “wrong” with Luke and his prognosis--from deafness to blindness to terminal conditions. Let me assure you, they were not glass-half-full people. I am forever grateful for the exhausted nurses who took time to talk to me and hug me on hard days. Ultimately, while some of his birth defects were minor “quirks,” he was diagnosed with a couple neurological issues which were devastating to hear. I can’t even explain the sheer terror of watching a technician complete an ultrasound of your newborn’s brain and waiting weeks for a follow-up MRI to confirm the diagnosis. Ultimately, Luke’s primary diagnosis of Dandy Walker Variant affects both fine and gross motor skills as well as cognition and muscle coordination.


I am so grateful those dark months in the hospital with our family separated are behind us. We still have bittersweet moments, but we have come to accept Luke’s neurological conditions as what make Luke the wonderful, sweet soul he is. He is globally-delayed, and we work daily with various therapies to help him reach milestones that came so easily for our other two children. Besides his difficulties with mobility and communication, our biggest struggle is his inability to digest his food efficiently. He decided to stop eating altogether and is now 100% feeding tube dependent. At this point, I feel like an honorary nurse, dietician, and therapist, and the feeding tube is second nature. Despite numerous genetic tests, Luke still has no overarching diagnosis--he is truly one-of-a-kind! ☺


Miggy: Will you explain how Luke’s needs affect your day-to-day life?


Samantha: Our life was turned upside-down by Luke’s birth and nearly 3-month hospitalization. Prior to his birth, I had only spent a combined 2 nights away from my children. Suddenly, my husband became Mr. Mom--laughable for any who knows him--and I lived in the NICU with Luke. I would often make the hour round-trip drive multiple times a day. To say the first six months of his life was a test in basic survival for our family is an understatement. While things have settled down since then, our life is still drastically different. Thankfully, my employer allowed me to take a two-year leave, and I will return to work full-time next school year. Life as a stay-at-home mother for a special needs child is not the stuff of Martha Stewart and Pinterest projects, but we are surviving. Finances are certainly tighter but being able to work with Luke throughout each day is worth it. We typically have multiple therapies and appointments a week, but I have committed to making my time off work count as much as possible.


Miggy: What are the biggest worries you face for Luke? On the flip side, what are the hopes and dreams you have for him?

Samantha: Initially, all I worried about was quality of life. We were first told he would most likely be blind, deaf, and completely feeding tube dependent. It was heart-wrenching. Thankfully, this was not the case, but his digestive issues intensified. Prior to a change in hospitals, I began to think that we were going to lose him. Those were some of the hardest days of my life. Though he is doing remarkably now, the memory of those terrifying days is ever-present. It puts the developmental delays in proper perspective. Along those lines, my hopes and dreams for Luke are health and happiness--a quality of life that every child deserves. If he never speaks a full sentence or never lives independently, that is okay. He is here, and he knows a love like no other.


Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Samantha: We had a hard time explaining Luke’s prognosis to our then-3 and then-4 year old. We were honest with them and told them to be proud of their little brother. Once when we are out in public, a well-meaning woman asked Audrey about her “adorable baby brother.” Audrey proceeded in her typical can’t-take-a-breath style: “I know. Smirk. He IS adorable because he’s Lukie our special baby brother all babies are special I know that but God gave us Lukie because he’s the specialest and He knew we would take good care of him because he is going to take a LOOOONNNG time to learn to walk or talk but that’s okay because we love him just the same.” BREATHE. The lady didn’t know what to say, looked at me and smiled, said “Bless your heart,” and quickly walked away. We talked about over-sharing in the car on the way home.


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?

Samantha: Right now, we are so fortunate. People have been incredibly supportive and compassionate. I mean, who doesn’t love a baby? Add Mickey Mouse leg braces with a natural blonde mohawk, and he is a heart-breaker! ;) I hope people are just a kind as Luke grows out of the “cute baby stage” and his specials needs are more apparent. A six year old who struggles to walk and talk is more difficult to include and approach but deserves the same outpouring of love and affection.


Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?

Samantha: I have learned that there is a fine line between acceptance and advocating--they are not mutually exclusive. As a parent, your child’s needs are a priority. As a special needs’ parent, there are just a lot more needs to prioritize. I tend to worry what others think of me and to avoid confrontation, but Luke’s health and well-being have forced me to have some tough conversations with medical personnel. It even led me to drive to a new children’s hospital and refuse to leave the ER until I had a follow-up appointment with a specialist that week. I’m sure that ER resident still has nightmares, but we saw that GI specialist with the 6-month wait just two days later, and he thought Luke’s condition was serious that he admitted him to the hospital where we stayed for almost 2 weeks. To this day, it was the craziest, but best, decision we made. I have also learned not to feel guilty for trying something new that I think might help my child. I don’t want people to pity me or to think that I am in denial and refuse to accept his prognosis--it means I love my child and will go to the ends of the earth to improve his quality of life in any way possible.


Miggy: If you could say something to the mom who just starting on this journey of special needs, what would you say? What would you say to yourself if you could go back in time?

Samantha: This question is at the heart of what this Special Needs Community is about--being there to support those who are just at the beginning the journey. I pray that this speaks to someone who is out there hurting just as much as I was.

When I see special needs moms, I see rockstars. I see real-life saints with the patience of Job. I see women with faith and grace far superior to my own. I see women who chose life for their children in spite of a doctor’s prognosis.

That was not me. I had no noble story--Luke’s medical issues were not known until delivery. I was shocked and broken. I was certain that God had been wrong when he chose me for Luke. Why would He think adding a child with significant needs was right for me? The more people told me, “God chose you for a reason” or “God doesn’t give you more than you can handle,” the more angry I became. Sitting in an open 40-bed NICU with drug-addicted babies and babies who had no visitors for weeks on end only stoked that anger and resentment. Luke shouldn’t be here. I shouldn’t be here--I did everything right. I had prenatal care and took my vitamins. I have never smoked. I did not have 1 drop of alcohol. I didn’t deserve this. I am not like these other mothers who made horrible choices. Let me tell you, the more this ugliness came out, the more inadequate I felt as a mother and a human being. At my worst, I was jealous of other babies and parents who came and went, “just” dealing with withdrawal, jaundice, or cleft palate. Those babies could be fixed; mine could not. Though I am ashamed to even write that, I want mothers experiencing this to know that it is okay to go through this range of emotions. Special needs’ mothers are not perfect. Everyone has a chapter they don’t read aloud.

What changed is that in those quiet moments in the NICU, I began to look for other specials needs mothers and learn their journeys. How did they navigate this with such poise? I quickly found Miggy’s Spotlight. In it I saw parents able to revisit their darkest days with newfound perspective. Maybe I could get there to?

I found Gwen Hartley’s hilarious and honest posts to new special needs’ mothers that said exactly what I was thinking, but was too afraid to say. Maybe I could laugh again? I made a new friend whose daughter was much more negatively impacted than my own. Maybe I could count my blessings instead of my burdens? I found that one of my old high school friends had a daughter who was battling cancer. Maybe I could pray again, if only for her, when all of my other prayers had felt so jaded since Luke’s diagnosis?

Connecting with this new community, instead of isolating myself, allowed me to meet REAL mothers from all walks of life--many whose children were dealing with far greater struggles than Luke. Only then could I look at my life and Luke’s prognosis from their perspective. My baby was still here, and everything else was secondary. I was able to eventually emerge from that negative view of my circumstances. Despite having a front row seat to my own character flaws in a time of immense pain, now there is not a day that goes by that I don’t thank God for the life I have and the opportunity to continue to love each of my children just as there are.

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"Everyone has a chapter they don't read aloud." That is the truth Samantha. When we choose to become parents and invite children into our lives (and likewise assert our lives on them), when you really think about this invitation there is a HUGE amount of uncertainty and risk that we are taking on. We don't know what our children's likes or dislikes will be, we don't know what their personality or preferneces will be and we also don't know what their abilities or disabilities will be. We tend to assume that this journey of parenthood will be typical, when really we have no promise at all.  Thus when this trajectory of a normal pregnancy and a healty child doesn't happen it's natural to feel sadness, anger, confusion.... grief. It is an adjustment on every level and big life adjustments take time. Of course this will vary from individual to individual as well. Thank you Samantha for being so vunerable and open in sharing your heartfelt grief and struggle through this process--I know there are many moms and dads out there who can relate and who will feel so gratful to know they are not alone in their feelings of grief. But, I will never cease to be amazed at acceptance, gratitude and love that grows from that same tender soil of grief. It's really quite amazing. Thanks again for sharing your heart and your sweet Luke with us today Samantha.

As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com.

Have a great weekend!

XO

Miggy

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