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Diaries of a Special Needs Mom​

Ramblings from a Special Needs Mom...

1/31/2018

8 Comments

 

In your lifetime you will meet people along the way in every phase. In childhood, in your teen years, through high school, in college, and into adulthood. When Matt and I planned our family we were excited to make memories together. We saw ourselves raising a child amongst our friends who were in our same phase of life. We saw our children growing up together and playing sports together, attending daycare and preschool and having playdates together. Our worlds were rocked when our son came into our lives. Dreams crushed and our idea of our family of two or three beautiful children to never be met. We now had one very beautiful but broken child. Instead of bringing him home from the hospital to start our new life we were stuck in the NICU learning the extent of his brain damage. Instead of showing him off to our friends and family we were keeping him sheltered inside watching him seize and cry. Instead of going back to work and being scared to leave him in daycare I was home trying to get him to drink seizure medications and pumped breastmilk, taking phone call after phone call from specialists and doctors. I had cramped hands from signing early intervention paperwork, tired eyes from watching him suffer from seizures, and pained ears from listening to his colicky neuro cry. The shift work between Matt and I began, trying to give each other relief from this new and scary life. Taking turns to rest from the trying days, to think to much about our future and cry and ask why us? This new phase of life was absolutely horrible, terrible, heartbreaking and tiring. But in this new phase of life we learned to get back up on our feet and live. We learned to walk in different shoes, shoes that were not comfortable and weighed us down at times. We were on a journey that we never thought we’d walk. And we were about to meet new people along the way that we would have never connected with had it not been for our new precious son being brought into our lives the way he had. Like every phase in life there will be trials, and triumphs. When our son was around six months old our worlds were rocked again. Instead of meeting milestones like learning to sit up and grabbing at toys, he was still struggling to hold his head up and loosing the skill to suck and swallow. We were yet again met with unknowns and unfamiliarity. We were undergoing surgery to have a feeding tube placed and welcoming nurses into our home to help us care for our son. We slowly found resources and guidance from others who were walking a similar path. We found families along the way whose “normal” was our “normal.” I looked up to those who were further along in their journeys and confided in them for advice and an ear to listen. It’s those Mom’s I met who would become some of my best friends and who would be like family to us. Our lingo was different from most Mom’s who had children the same age as ours. In playgroups we stuck out like a sore thumb, we tried to fit in but the differences between our children were too different. While their children were meeting milestones, learning new skills, taking their first steps, our children were undergoing procedures, meeting new specialists, and getting new diagnoses. We slowly faded away from gatherings with typical children and clung to families who walked in our same shoes. It was just easier this way. And it was comforting. It felt familiar and we didn’t have to explain things like why we had to bail out last minute for get togethers or why we were crying or frustrated or tired from appointments and therapies. We grew so close to these families. We trusted each other with our children and felt safe. I know that this same connection is found between other adults in our phase of life. Adults with healthy children of similar ages, attending school together, on the same sports teams, having playdates and sleepovers and out in the community together. But a big difference between our families and theirs is that their families will probably not experience the losses of so many of their childrens friends at such young ages. In Silas’ short life he has already lost two of his very close friends and we are now experiencing the heartache of one of his friends that has unknown time left with his family. It’s eye opening, and its scary. It’s unfair. But it has taught us to really embrace every single day we have with our son. When I get angry or sad about the hand we have been dealt, I turn to writing, because it is the only way to really express my thoughts and feelings. Today I am writing to acknowledge these thoughts, in the jumbled mess that they are. This phase of our life is not what I had hoped for our family, it’s tiring, and frustrating and unfair. There are countless positive things I could write about this life, and I try to embrace the triumphs and focus in on our happiest moments together. But there is also the need to express the feelings that aren’t always positive. It’s important to recognize that this life is hard. And unfair at times. Reality is, our time with Silas is also unknown. And being close to these families has shown us this. We walk similar paths as them. And we could easily end up in their shoes. It’s scary, and the more loved ones we lose the harder it hits. I am thankful that we’ve found these families and our children have grown up together and crossed paths. But tonight my heart hurts extra for those we have lost, for those we will lose, and for our own son who has a harder path to walk then a kid his age should. Tonight as I reflect on this phase of our life we are in I am trying to remember to never give up, to hold onto hope and embrace every moment we have with him.

​Prayers, light and love to those who need extra tonight.
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8 Comments
Ashwini Crasto
1/31/2018 06:51:51 pm

Hugs Melly!!

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ann
1/31/2018 08:57:36 pm

Peace and love...brave mama and daddy. Peace and love...

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Julie link
2/1/2018 02:31:15 am

I hear you!! It is a tough road and if shouting that from the mountain tops I not possible, then writing it out is a great alternative.

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Leslie
2/1/2018 02:41:40 am

Thank you so much for your post. I do hope that you will continue writing here. Love and a special hug for you this morning. Xx

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Nancy L. Diani
2/1/2018 08:47:06 am

Prayers for the three of you... I just love this picture of Silas <3

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Betty Hallenbeck
2/2/2018 05:14:26 am

Melly,
I write, too, when this path is too long or steep or bumpy or thorn-covered. I enjoyed this piece very much. Could I use it in the future with an Intro. To Exceptionality class? My top goal for those students is to understand how little they actually know about the family lives of their students: the parents’ sorrow and fears and exhaustion, the siblings’ struggles to understand and to be patient so often, etc.
love to all of you,
Betty

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Melly
2/3/2018 09:01:41 am

Thank you Betty!!! Of course you can use this in your class and any of our posts/photos to spread awareness and help teach!!

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Mema Debi Sullivan
2/3/2018 08:48:06 am


My Son and Daughter in Law AMAZE me EVERYDAY! SILAS is our Superhero for sure! And although this is so hard, Silas always knows he is LOVED by his parents, no matter how hard things get.
"The sun is up and the sky is blue, Just remember I love you"... This is the feeling they give Silas everyday, no matter how rough or dark it gets... He feels their love... and they feel his. I wish I could take the heartbreak and pain that they feel everyday away and help them daily through this tough life they all live, it's hard as a Mema and Mom to see their struggle, and I daily feel guilty that I can't help more. The most I can do is pray every day for strength and peace for them. And let them know I love them as often as possible.


Silas is our gift, yet he endures so much for such a little guy. Some times I don't understand why this life was given to him, and Matt and Melly. Please keep them in your prayers always. Every day is so hard for them. With moments of happiness sprinkled throughout the days, and other days so rough the tunnel light is very distant and small. I'm so, so proud of how daily do all they can daily, and given him all the opportunities he can possibly have regarding therapies surgeries, and enjoyment experiences, like surfing, cheering, t-ball, and so much more! Matt and Melly are EXTRAORDINARY people. Melly has helped countless families with her support and experience as a special needs mom. When Si was born, there was not a special needs family or support team to jump in and help and guide. Melly began searching out people who had similar struggles and she built a support system and I have been with them all several times. They are such a brave and strong and loving group of people. Supporting each other and sharing the highs and lows. By researching different treatments and sources of help, she has helped countless families in Maine and around the USA.


They recently moved closer to Boston, to New Hampshire, so Silas would have more opportunities and options for healing, and even more therapy options. They both have added to their special community as they learned the area. In just months now Melly has helped many more children and parents, as she spreads her love and understanding towards special families in the same situation.
Maybe that is why she was chosen to be Silas's Mom. She is AMAZING!


My son, is the most humble, hard working ,and loving dad I have ever seen! He and Silas have a bond that is so extraordinary it is beyond description. Something magical happens when they are together. It fills me with pride and love knowing he loves Silas so deeply and has a way to communicate his love without even saying a word. There love is like one I have never seen. It's deep and everlasting.
As Melly has researched and reached out to so many, Matt has been working so hard to keep food on the table and bills paid, as well as trying to afford Silas' chances to go to therapy retreats, and optimal new treatments or operations to make Silas's life better. As you can see, although they have been given a extremely difficult situation, they are giving Silas the best life he can have. I'm so proud of both of them. And with lots of patience and love, and stress and struggle, they pull together and push through the storms that arise.

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    My name is Melly Brown. I am the mother to Silas, who has profound special needs due to a brain injury at birth. I'm here to blog about the nitty gritty, raw truth about raising a child with special needs. The highs, the lows, the ups, the downs. I will review some of our favorite products, share the secrets of how to navigate this special needs life, and vent about some of our toughest days, and most rewarding as well. Join me in my journey, I do not walk this life alone, and would like to spread awareness for all those out there who live this crazy tough special life! 

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