Thank you so much for inviting us over to share our story! I’ll be honest, I’ve fretted about my answers for so long! I’ve cried as I wrote them out and I’m sure I’ll cry as I read them when they’re posted. I sincerely hope our story brings light and life to someone during a time when they feel so alone.
I am Samantha. I am wife to Ronnie and mom to twins, Alie and Brook, and a tiny force of nature, Emma, and then our most special gift, Henry (Hank). I’m finding a new me in this world of special needs parenting, a new footing in my faith, and a new appreciation for the fragility of life itself. You can visit us on Facebook using #HankStrong or searching for @TeamHankStrong. You can read more of our story at Henry The Hero Blog as well.
Welcome beautiful Samantha & Henry (Hank).
Natalie: How did your special needs journey begin? (What was going through your heart & mind during this time).
Samantha: It began simply enough. Hank was the last of our bunch, our one boy. He was our answered prayer. Pregnancy and delivery were normal, no complications or concerns. During our stay, he failed his newborn hearing screenings.
The first 2 times that he failed, the nurses thought that it was possibly because he was born via C-Section and may have fluid. Eventually, upon discharge, we were given a referral to see Audiology for comprehensive testing. Moving ahead a few months and a move from California to Florida, we saw the doctor. He was diagnosed with total hearing loss in his left ear. Because of the nature of his hearing loss, she referred us to a genetic counsellor.
I went in to the appointment completely unarmed. Guard down. I kept thinking this was irrational and precautionary. She was a gift from Heaven as we travelled our path though. An hour later, we were given orders for blood work, an MRI, ultrasounds, and 2 more referrals. On October 21, 2016, at just past 5mo old, I sat in the office holding my chubby little boy with my step-mom by my side.
I was again, ready for this to all be nothing. Another hour appointment and I was told that we tested positive for CMV, which explains the hearing loss. Hank has a small head which warranted the MRI and she said with a deep sigh, that his MRI study revealed a condition called Polymicrogyria. It is located on his parietal, temporal, and occipital lobes. She kept talking, much of which I didn’t hear. I couldn’t. Inside, I felt myself fall apart. I felt my heart just break. This couldn’t be right, was my thought. I had 3 healthy daughters, what happened?!?
I’m not positive how I held it together. I explained it all in the car ride home to my step-mom. We got there and when we had my dad and husband together, I explained it all again. I made the phone calls to my siblings, my grandparents, my mom. I text my closest friends. I went to work the next day and relayed it all to my co-workers and doctors. All without a tear.
That next day though, as I sat at my desk, they fell. The tears just slid out. No sobbing, no sounds, just tears. I think that’s when I really learned what heartbreak was. True grief and sadness. My co-worker said “Go on home.” And on that drive, that is where I fell apart. I was so unbelievably angry at God. I felt so betrayed; He promises good in our lives and then this!!?!? I cried for Hank, I cried for the life that he would never have. I cried for my husband and our daughters, for the relationship with a son and brother that they wouldn’t have. I cried for everyone. I went through the phases of grief very classically, the depression and anger, the bargaining, the denial.
Sunday came. It has always been my day of rest and peace and calm and reassurance. At alter call, I took Hank down to the pastor and told him briefly. And he said, “We love him anyway”. In that moment, I realized that the only way to go through this, was with 100% of my faith that God has a great plan.
Natalie: What is the name of the condition that Hank has? Can you share with us a little more about it?
Samantha: Hank has bilateral, multifocal Polymicrogyria. He has congenital CMV, amblyopia and strabismus, and Spastic Quadriparetic Cerebal Palsy which is secondary to the PMG. He is also the 4th reported case of a condition called Postcricoid Vascular Malformation. He has a group of vessels that extend over his voice box and down his throat.
PMG literally means many small folds. These folds inhibit normal brain function because the confuse the neural pathways that would normally allow for communication between centers of the brain. Henry’s affects basically everything. He doesn’t eat solids, he is non-verbal, cannot sit or do anything physically unassisted. We have therapy 3 times weekly along with supplemental therapies such as massage, music, animal. There are many things that he cannot do, but he can love and that is by far the greatest gift.
Natalie: What are your worries and wishes for Hank?
Samantha: In the beginning, I worried about how we would take care of all of these things. I worried about whether or not I was capable. I worried about what was going to happen in a year, 5 years, 20 years, and I think that was a little ridiculous. Because I can’t control 5 years from now, I can only control today and a small bit of tomorrow.
Now though, now I worry about making sure we have his favourite food. I worry about whether I remembered to brush his teeth last night, are his clothes clean, where his bottle went, did we run out of wipes. I worry about Mom things. I worry a little for the future, I worry about seizures starting. I worry about him becoming school-age and what we’ll do then. I worry about those things. Time will march on though and the only thing I can control is my reaction to life.
My wish for Hank, is that he always feel loved. I hope that between 2 sets of grandparents, 3 sisters, numerous aunts and uncles, and the body of Christ, that he knows he is loved and cherished. I wish to have many days of his smiles and laughter, I wish to have many days watching him dig his toes in the sand and smile into the sun. I don’t wish for miracles, I wish for peace.
Natalie: What are some words to describe Hank? What do you love about him?
Samantha: Hank is a shining light! He is a beautiful reminder of innocence. He is the sweetest and happiest boy, always willing to give you a grin or giggle. He touches the hearts of absolutely anyone who meets him. Through Hank, hearts and minds and lives have changed. I love that he gets to be my cuddle buddy, I love that I get coo’s and slobbery kisses. I love his sweet hugs and laughter.
Natalie: It can be extremely isolating for a Mother going through this journey, and family and friends can struggle with how to best respond. Do you have any advice?
Samantha: This has been the challenge of a lifetime honestly. There is nothing that can prepare you, there is no warning, there are no classes. It’s a deeply personal affair that you have to work out on your own. There aren’t any experiences that can compare to the rollercoaster nightmare this feels like.
This downward spiral of fear and sadness and grief is overwhelming at first. You could easily, and some do, get lost in the heartache. I am fortunate that I have a tribe of about 10 women from our time in California, and we love each other to the ends of the world and share our lives together. We have a group on Facebook that allows us privacy for our real-life problems and we can support one another and vent with no judgement.
This tribe banded together, they held me up when they could have easily shut down and let me drown in sorrow. I have an enormous family who was not about to give up on us; my sweet cousin even drove 6 hours to spend the weekend with me shortly after our diagnosis just so I wasn’t alone. To the friends and families reading, I hope you stay close by.
ASK what you can do, I know that it seems like you can’t help at all, but I bet there is laundry to do, groceries to get, a nap needs had. Moms, please don’t take it on alone. It isn’t that the people surrounding you don’t want to help; it is simply that they do not know what you need. Dig your heels in to these relationships and invest in them fully, invest in your faith and yourself because when the dark clouds roll in, they will be there to hold you.
Natalie: I’m passionate about the special needs and self care connection. The special needs journey can bring some big challenges, how did you fill your cup during those times? Are there any self care practices that helped you on your journey?
Samantha: My cup is filled at church. It sounds so cliché, I know, but it is so true. These folks, didn’t know me from Eve. We moved to a place where we knew no one, no family and no friends. We had gone to church a handful of times before Hank’s diagnosis and even then, it felt like we were pulled there. When I joined the Sunday School class and shared our story, I’ve never felt so loved. The hugs, the phone numbers in case we need anything, the words of encouragement…and they continue to this day. A group of gentlemen even drove 3 hours to the hospital when Hank had surgery last summer, because my cup was empty and it needed filled.
I keep connected to the normalcy of parenting with my 3 older girls, I’m reminded that in the world of special needs I am awarded a slow down. I stay in touch with my friends who face other challenges, it reminds me that I’m not alone and I have support to go forward and fight the good fight for him.
I’d love to say that once a month my husband takes the kids and I go to the spa for an hour, that I work out 5 days a week, that we have girls nights out, or whatever else there is. But that simply isn’t true. My cup is filled by my Saviour, knowing that his hand guides my life keeps my steps light.
I think keeping my family involved in our community helps. We haven’t isolated ourselves despite the difficulty going out. We have to remain a unit that relies on each other. We go to festivals, out to eat, to zoos and aquariums, everything a “normal” family does. And when Hank has other plans, we adjust. Keeping my other children happy, helps keep me happy. It’s a full circle.
Natalie: What are some lessons and blessings you have learnt since becoming Hanks mum?
Samantha: Flexibility and patience! I am the worst with patience, I really am. I’ve learned a different kind of love. I’ve learned to persevere. I’ve learned kindness and gentleness.
It’s crazy to me that this tiny human who can’t do anything can teach us these things. It’s been a blessing to watch others be pulled to him. I get to share his story and watch their hearts soften and I can feel a change. I’ve gained a new perspective on disability and I hope I’m able to share it with others. There is a new kindness in my heart, knowing that my struggle is invisible has helped me see that everyone else has one too and we just don’t know what it is.
It has been an immeasurable blessing to watch his life unfold before me, knowing that I was chosen to nurture this angel and share him with everyone has truly impacted me.
Natalie: Do you have a favourite quote, prayer, or piece of miracle inspiration that you would like to leave us with?
Samantha: “I am not saying this because I am in need, for I have learned to content whatever the situation.” Phillipians 4 verse 11.
My contentment has guided my parenting in this special needs world. I cannot change who he is, nor would I want to. I cannot give him medication that will fix it. We can do therapy all day and see no progress. But I know that it is okay. It does not change my love for him. Nothing he is diagnosed with, no challenge ahead, no failure of skill, no news…will ever change the love a mother has for a child who so desperately needs her.
Find a place that can feed your soul, find the people who will surround you with love and kindness and support, and hang tight because for all of the lows we’ll experience, there are highs that exceed our expectations.
My wish for Hank, is that he always feel loved. I hope that between 2 sets of grandparents, 3 sisters, numerous aunts and uncles, and the body of Christ, that he knows he is loved and cherished. I wish to have many days of his smiles and laughter, I wish to have many days watching him dig his toes in the sand and smile into the sun. I don’t wish for miracles, I wish for peace. – Samantha
Natalie: Wow Samantha thank you so much for sharing your incredibly inspiring story. Hank is a divine bright light and you can clearly see he is surrounded by so much love. I loved your Pastor’s response, “We love him anyway” – so beautiful. I absolutely loved reading your answers, your insights are so inspiring! The happiness in Hank’s smile is a testament to the love, faith and peace you have created together.
I was amazed at how similar our journey’s unfolded, in almost the exact same way and in the same timing! I read every line nodding and understanding and smiling. Thank you Samantha & Hank it is an absolute honour to be able to continue to share your light and love.
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