6 Thoughts for 6 Months as a Special Needs Mum

Now I know I've only been a Mumma to a baby with special needs for 6 months & I don't have much to offer in terms of advice & all...In reality, Reid is just a baby & Down syndrome has really played second fiddle to her eye & heart surgery, heart failure, numerous hospital stays, feeding tubes & such...



To be completely honest, I really didn't even know if we'd get here -celebrating 6 months with Reid...The first few months of her life felt like it was constantly one thing after another in regards to her health...Some really scary moments happened, where now looking back Craig & I can say we thought we might have lost her but never voiced at the time...But, Sweet Jesus, here we are today & I feel in a way, in these 6 short months, I have earned my badge of honour as a Special Needs Mumma...


So, although I can't tell y'all what life as a mum of a child with special needs will be like later, this is what I know to be true now...




1- Different is more beautiful than you can imagine...


I've been quite open about sharing my thoughts about how devastated I was when we found out Reid had Down syndrome...I so wish the mum, person, woman I am today could have held the scared mum, gutted person & unintentionally ignorant woman I was that day...Yes, it's important to grieve what you thought your baby would be, but I wish I could see my life, my baby girl & all the beauty it's brought to that very sad hospital room 6 months ago.


~Seconds after Reid was born~



2- Love & Support will be life changing...


The vast amount of love that came from friends, communities, even strangers has changed how I view the world...It's changed how I will act or show kindness to someone else, how I will support those that need it & how I will truly love others from now on...




3- You are tougher than you even know...


I always thought of myself as quite a strong person- But these last 6 months pushed me to limits I didn't know I could do...It has changed my definition of what strength is & watching Reid overcome challenge after challenge brought a determination within me that nothing in my life has come close to...
~3 nights of no sleep, months of  an intense feeding schedule & hours before Reid's heart surgery~




4- With that strength comes a fierce Mumma-Bear-Protectiveness...


You will become an advocate for your child in ways you didn't have to with your other children...Not only medically speaking with Reid, but I now feel the need to advocate & bring awareness to Down syndrome & share our lives so others can see how amazing it all can be...

In one of Reid's hospital stays, I was sharing a room with another little girl with Down syndrome & her mother from Algeria...We got talking & I was stunned in sadness, when she told me that if they had stayed in Algeria her daughter would have had a very difficult life...That they had to flea to Canada to give her any opportunity to thrive and/or survive...Between that & learning that many Down syndrome children are given up for adoption or aborted, I feel that part of my purpose now in life is to advocate & show others that although our life is a wee bit different it's amazing & full & oh so bright...





5- Stop the worrying, Shut Up & just watch...


One of the things I "grieved" most when I found out Reid had Down syndrome was for my son, Noal- that he wouldn't have the typical sibling relationship & I was so very sad for him...

What wasted tears those were...Noal adores Reid, has such a strong protective presence in her little life so far & I know truly will be a sweeter little boy because of her...





6- You will believe in miracles...

Whether it's feeling like the whole world was thinking of your baby during a surgery or simply watching your baby with special needs hit a milestone...It will feel like a miracle...And you will in turn have a greater understanding of hope, gratefulness & want to thank God, Karma, Fate or Whomever- I promise you at some point you will be so grateful for something your child with special needs does...



So, there you have it...Although there most definitely have been challenges, gutted moments & a whole lot of heartache- The past 6 months has changed my life, shown me a new beautiful perspective on things & opened my eyes to things I never would have known else wise...




Wonder all what you will teach me in life Pip...Happy 6 months baby girl...



30 comments:

  1. Lovely sentiments. You have a beautiful baby girl!

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    1. Thank you Kara...I think so too!!!

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  2. Anonymous18.6.13

    Tara,

    My son was born with down syndrome in Aug 2011. At first, I felt so guilty why my son got down syndrome. Was it because I did something wrong to make our son have down syndrome? I thought he would change our world up side down and nothing good would ever happen again. I worried about the girls would hate us to give them such burden.

    After my son was born, he changed our views, values. I thought my husband would not love our son like how he love our girls. He proved me wrong. I love to see when he was holding our son. Our son is a beautiful 22 months-old baby. He had 1st surgery (something between his stomach and intestine was too narrow) when he was a week old. He had his 2nd surgery on his airway when he was 8-months old (his airway didn't grow and it was too narrow for him to breath). I am grateful he is a healthy boy (at least for now). I am grateful to be his mom. I love him to death and can't imagine to trade him for a baby without down syndrome. He made me appreciate what I have now. We had many times thought we would lose him.... Now, I don't care if he has down syndrome or not. In my eyes, he is a perfect handsome little man. I love being his mom and I enjoy every moment of it.
    Btw, your daughter is absolutely beautiful.

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    1. Thank you so much for sharing...I know I've found help in others stories...those mums who have been there-done that!!! So thank you...I hope your son is onward & upward from a health perspective from here on out...

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  3. I have a 15 year old special needs niece (Pader-Willi syndrome). I have been so impressed watching my sister and brother-in-law be her parents and advocates. Wishing your family love and strength from Philadelphia.

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  4. Deb Burke18.6.13

    I can so relate to your #5 as that was the hardest part for me. 19 years later and they are still the best of siblings! You can see a picture of them on my FB page. She's went on school trips with him, taken him to college with her for weekends, on "dates" with her and her friends, and attended 2 homecomings and his junior prom with him. We have been very blessed by both of them. (She starts graduate school in the fall to become a speech pathologist too.) And also want you to know that your little girl is absolutely darling!

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    1. Deb, that is so great to hear...I love hearing from other mums especially in regards to siblings...I checked out your FB page- amazing...

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  5. Anonymous18.6.13

    You and your family will always be in my prayers. Reid is a "living angel" who will continue to make you live your life in awe and wonder. You are a beautiful young woman who has been through so much already!! My dear sweet daddy always told me that "the darkness always comes before the dawn"!! The sun comes up slowly and becomes more brilliant as the day goes on. You and your little Reid will shine like the sun. Although there will be ups and downs, as you continue to grow older I, as a mother of two, know that the rewards of motherhood are endless and abundant. My children and their children, complete the circle of my life. At the age of 65, I can honestly say that I am a much better person for having had my daughters. They have taught me much more than I could ever have taught them. I hope you are able to continue to live in the present and witness each and every moment of your little one's lives. I wish you all a life filled with love, joy and peace.xoxoxoxo

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    1. Thank you so very much for continually thinking of Reid & all of us...I feel like we really are living some sort of "dawn" now after all we've been through....Thanks again...

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  6. My little Gavin is 6 months old, too. Born November 30th with Ds. We've been doing the same thing - heart surgery and all. He's number six in our family and SO loved! Beautiful blog. Thanks!

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    1. Ahh I hope Gavin is doing well....Amazing how they bounce back eh? Thanks for reading the blog...

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  7. Anonymous19.6.13

    Hi Tara and Craig,

    Your 6 thoughts are amzaing. I think the picture of Reid shows she just might be a gymnast ... what a pose .. LOL. I hope you two are planning a trip to New Liskeard this summer ??

    Take care. Pat

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    1. Hi Pat....Noal was in gymnastics this winter so you never know Reid might just follow in his footsteps...
      Miss you..

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  8. T ~ you amaze me..I am so inspired, each and every blog post I read. You have a way to move people with your words that is undeniable. I am beyond proud of who you were when we first met 15 years ago, the beautiful soul you have become, and the absolutely amazing person you aspire to be...This journey you are on has changed your life, and in turn, has also changed the lives of others, including mine.. You are a part of something truly special..and I honestly believe in my heart of hearts you were hand picked for this. Over the last six months you have shared your soul with all of us, and for that two little words "thank you" don't seem quite enough...I know we don't get all too mushy these days...but I needed you to know that you've changed the way I look at life. Realizing it's too short to sweat the small stuff. I live now reminding myself daily of how much I have to be grateful for, how kind I should be to others, and to embrace every situation as it comes. Pip and Noal have an incredible, strong, kind hearted role model to show them how to live their life..they have you...

    Crazy how life has changed...and is definitely more beautiful xox

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    1. Muls...you have to stop writing such beautiful comments...You make me cry all the time...Thank you for this...I know Pip will inspire anyone who reads this blog but it's those that are closest in my life that will actually see the change in me...So thank you...I LOVE YOU

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  9. Anonymous22.6.13

    They truly are a blessing an angel sent from above my son with down syndrome just turned 12 on the 20 th and I wouldnt change a thing about him....Your daughter is a doll.

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    1. Thanks...I'm starting to believe they really are angels too!!!

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  10. She is adorable! That last picture was so funny for me to see, because my little Dianna {now 14 months, she has Trisomy 21}, sits holding her foot up all the time.

    I love the things you shared and your honesty. I think one thing I have learned is that there is no normal; I've even quit using the word because it just doesn't seem to fit anymore.

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    1. I totally agree with you Sheila- There definately is no "normal" & that's kinda the beauty of it all, I think....Thanks for sharing & cute that your little Dianna does that too:)

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  11. Anonymous22.6.13

    Your words are so full of honesty and wisdom. I had many of the same feelings when our daughter was born, gutted and ignorant. However, 14 years later my daughter loves to go to school, loves to play the Wii, sends me text messages that are so cute and funny, and right at this moment she is holed up in her room with two of her friends giggling about everything, just like teenagers do. Reid will continue to amaze you, and you will realize how closed your eyes were until she came along. Thanks for sharing.

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    1. Thank you for sharing as well...It's amazing to hear from other Ds mummas...Appreciate your thoughts & taking the time to comment....Thanks so much..

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  13. My wife forwarded me this post today because it speaks so well to our experience as parents of two children, our youngest with Down syndrome. You've so perfectly captured the feelings we've had as we've dealt with unexpected diagnoses, surgeries, worries and joys. What you feel to be true now is still true for us now as we prepare for our youngest son's second birthday next week. Just some of the emotions are a little less raw now as we find ourselves caught up in the craziness of our daily lives.
    I look forward to reading about what's next for your family as I wonder what's next for ours.
    Fans from Minnesota,
    Peter and Jodi Rebuffoni
    (sons Enzo- almost 5 and Maceo- almost 2)

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    1. Hiya Peter & family...Welcome to Happy Soul Project- so glad you found us!!! So glad to hear from others who have been there & have the same feelings- Kinda validates my own in a way...Thanks for sharing & glad you're along for the journey with us..

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  15. Brooke Hutchings13.8.13

    I love it!! My Cooper with DS just turned two. I couldn't have said it better "love and support is life changing". This community which was all complete stranges have reached out in more ways than I could ever imagine and it really has changed the way I view and treat others. Cooper has not had many medical problems yet or at least major ones so we are really lucky in that way but I still work full time. We have had LOTS of daycare problems and my momma bear protectivness has come out in more ways that I would have ever thought possible. I HATE confrontation really hate it face to face. BUT I will battle away when it comes to what is right for Cooper. And really don't find myself getting emotional which tends to happen. I guess someone is helping me remember that it would only make things worse. Cooper is a fighter I watch him fight to be just like his brother every day (which by the way I also was upset about but for no good reason) they are best buds. Cole my oldest asked me the other day if I got Cooper just for him because he is his best friend. And he thinks we went together and picked out Cooper from the store. But you know if that was the way it happens (picking out from the store) I would pick Cooper! He is perfect the way he is!Sorry for the long post.

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    1. Please don't apologize...I love when others share their thoughts & comments....I learn from that!!! Cooper sounds just lovely!! And I agree the Ds community is unreal with such support and amazing people...Glad you found Happy Soul Project...

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  16. Wonderful post about your beautiful Reid. Thank you. Our son Carson is just past two. I remember having the same feelings you did in the hospital. Utter devastation and grief. I cried outside the hospital for a long time. I prayed for the doctor's 'suspicions' to be wrong. They weren't of course and we began the same tumble you did - trying to figure out how our life would ever be OK again. I wish I could go back in time and tell myself that not only would we 'survive', that our family would thrive and grow (mature?) in ways that we couldn't have thought possible. I remember shortly after we brought him home, I was holding him and he was looking up at his daddy. I remember thinking that this beautifully 'different' little pumpkin wasn't making any judgements about me - how dare I make judgments about him. I began to cry again.. not out of despair, but out of shame for ever looking at my son with disappointment. Every day with him is a miracle.. he is our miracle. He has taught us so much & the love we have for our son is absolute... like the love you feel for your beautiful daughter. I pray for her continued health and with all the best to your family.

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  17. Anonymous24.3.16

    I absolutely love your blog, insta, and Facebook! Your children are beautiful and so funny, and the live between Noal & Pip is amazing to see.
    I've always wondered one thing though..why is it that you call Reid Pip? How did you come up with both names? And why is is that Pip is the name you mostly use for her?
    Take Carr, and god bless you & your beautiful family 💞

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