A morning with the M's │ Day in the life │ Winnipeg Docu-tog

April 10, 2016  •  4 Comments

Today is a very special day. It is my nephew's 5th birthday! It's a big one. Every birthday is important but this one is especially significant since on the day he joined us earthside, we didn't know if we'd get 5 hours or 5 days with him, let alone 5 years! It's been an incredible journey of love and strength, hope and devotion. In his early days he fought an amazing fight, and he is here to stay. He suffered a brain injury and severe seizures at birth and has since been diagnosed with HIE and Cerebral Palsy, but these things do not define him. He is an amazing little man and this Auntie is so very proud of the boy he has grown in to! On March 25th, which was International Cerebral Palsy Awareness Day, I spent the morning with him and his family to document their day. I also asked my sister a few questions about being a special needs parent. I am sharing it all with you in the hopes that we can spread awareness, acceptance and LOVE. 

What is the most challenging aspect of being a special needs parent?

I have two. The first is fear of the unknown. As soon as we were told that Caleb had severe brain damage and what that meant, (they didn't know if he would walk,talk etc... we still don't know, but we are learning as he either meets the milestones or he doesn't) everything has been a "wait and see". It is very hard to deal with sometimes. The second is the constant frustration that comes with lack of communication. Caleb is very intelligent. However being unable to speak makes it extremely difficult to understand what he wants/needs. We get frustrated and feel helpless. I can't even begin to imagine what Caleb must feel like when he looks at something and wants it and nobody can figure it out... It breaks my heart.

What is the most rewarding aspect of being a special needs parent?

When your child does something for the first time at the age of 2 or 3 or 4 years old when you didn't know if it would ever come. Never knowing if it would or could happen. That first smile, laugh, roll. People take so much for granted and in this special life you really can't. Caleb told me through his eye gaze (a computer he controls with his eyes, and can use to speak for him) that he loved me... for the first time at the age of 4... The most amazing thing was hearing that. Even though it was not his voice saying it and they were words from a computer I still knew that those words were meant for me and that they came from him.

What is your favorite part about watching your kids interact with each other?

Their friendship. Knowing that even if Caleb never develops true friendships outside of his home (I truly hope that he will, but if it doesn't...) he will always have his sister. They laugh and play and argue just like typical sibling do and I love that. I was terrified to have another baby after we had Caleb because his injury was caused during birth, but I am very thankful that we made the decision to add Chloe to our family.

Do you think having a special needs sibling has had an impact on your NT (Neuro Typical) child?

Of course I do, but not in a bad way. She is still young so the questions that I anticipate she will have, have not yet been asked but she will always know a life far different than her friends. At the age of 2 she knows that medications are a part of Caleb's daily routine. She has offered to feed her brother and she wants to learn how to tube feed him. She can make him laugh, she tries to help him roll over because she knows he needs it, and when he is sick you see that hurt that we all feel, that helpless feeling in her little eyes. She has had to learn patience much quicker than the average kid because everything in this life takes a bit more time. Sometimes she has to come to the hospital and therapies and Dr's. appointments. She will grow up knowing that this is our normal and so far she is okay with it and I am thankful for that.

If there were 1 thing you would want people to know about your life (challenges, triumphs, support networks), What would it be?

What I want other special needs parents to know: You are not alone. Guaranteed those feelings you are feeling that you think nobody else has felt, or you fear what people will think if you say them out loud... we have all felt them too. Support from parents who are going through what you are going through is the best kind of support. The mom's I have met on this journey have saved me. I am very fortunate to have amazing family support, but even with that support I still felt very alone until I met people who fully understood my feelings and my struggles.
 
What I want families of Neuro Typical children to know: The majority of us (special families) encourage questions. We are more than happy to educate you about our kids, especially if it is your children that are asking the questions. They are not trying to be rude, they are trying to understand and that is the beauty of childhood. If your child comes up to mine, please don't apologize to me and take your child away. Say "Hi" to me and maybe ask your child who their new friend is. Don't stop inviting us to your children's birthday parties or outings. We may often say no, but please understand that there is a lot of grief that comes with this life, seeing other kids doing what ours should be is not always easy. But we still enjoy being included.  This is the road less traveled, but it is easier when we have people who will not be afraid to walk beside us.
 
What I want people to know about MY life personally: I am not as strong as you think. People always say they could never do what I do BUT the reality is, yes you can and you would IF you had to. My husband and I didn't ask for this life and neither did Caleb. This life wasn't given to us because "God only gives you what you can handle" or "Things happen for a reason". No. Sometimes bad things happen to good people. That's it. If it had been you, then you would do the same thing because that is what any parent would do for their child. I know a lot of moms and dads just like me who do it every day. Some have many more struggles and some have less, but you do it because this is the hand you were dealt. I love my son and my family with all of my heart.  I have heard some parents say that they wouldn't change their child for anything and I think that is great, but my truth is that I would. If given the opportunity I would take ALL of Caleb's struggles away because it is very hard for me to see his frustrations and I know if given the chance to make his life easier, I would. Since that can never be his reality then I will do everything in my power to make sure he  has the best life that we can give him. I will continue to fight for him, and advocate for him, and love him for who he is.
 
My sister and her beautiful family welcomed me into their home, and shared their day (and their breakfast waffles) with me. I am always overwhelmed by the amount of love there is in their home. Thank you guys for allowing me to be a part of your day!
 
If you want to follow my nephew's journey, you can head on over to his facebook page "There's Something About Caleb" and share in his celebrations, triumphs and send love, support and kind words!
 
If you want to watch the M Family's "day in the life movie" you can check it out on YouTube HERE, or click below (make sure you turn your volume down before pressing go, as there is music!)! 
Thanks for sharing this day with us friends! I can't wait to share more of your stories!
 
Cheers,
Alicia

Comments

Stephanie(non-registered)
There is so much love in this family, and you depicted it beautifully in your images!
Tara Geldart(non-registered)
Loved reading this! What a strong family! I loved the images of the two siblings!
Sara Nova(non-registered)
Beautiful. My son is 5 as well and has HIE, CP. Thank you so much for sharing this beautiful journey.
Emma(non-registered)
This brought tears to my eyes! What a beautiful family.
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