I just saw this beautiful video made by the International Down Syndrom Coalition for Life celebrating the life of those with Down Syndrome.  I cried with reminiscent tears remembering the difficulty I had when I first realized that my sweet Miriam had Down Syndrome.  I love this video and will soon be sharing the message that I would tell myself back to those first days she was born.
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Angels Among Us 12/27/2010
 
God knows me so well.  I was blessed with my beautiful Miriam at the perfect time in my life.  I have an angel with me everyday.  Whenever I'm struggling, a smile from this precious face always melts my heart.
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I was recently made aware of an extremely rude and completely disrespectful Etsy shop selling paraphernalia making fun of people with intellectual disabilities, specifically Down syndrome.  Really?  Are people that ignorant?  I guess so.  I reported the shop along with many other people and hopefully they are banned from ever selling on Etsy again.  If anyone has been around someone with Down syndrome you know that for the most part these people emanate pure love.  They know no hate.  They love unconditionally.  Well, perhaps that is a generalization for all those who have Down syndrome, and I’m willing to admit that even those statements could be described as labeling.  However, in my own personal experience of being a mother of a totally adorable love bug and for the other families I know who are blessed with a child with Down syndrome, I think we really do have angels among us.  Just look at her.  How can you judge and hate such a beautiful girl??

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Buddy Walk 09/22/2010
 
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The Utah County Buddy Walk is this weekend!  If you want more information about the Buddy Walk, I talked it about it on this post.  If you want to come and support our Miss Miriam, we’d love to have you join us.  All you have to do is pre-register here to pay for the event. Click on the link that says, register for an event.  Scroll down to the Utah County Chapter Buddy Walk in Cedar Hills, UT.  From here you may need to create a firstgiving account and then you will be prompted to put in how many people you are registering for and t-shirt sizes.   The cost is $10.00 for an individual and $30 for a family of 5.  All children/adults with Down syndrome are free.  All proceeds go to support the UDSF.  Along with the registration fee you will receive a t-shirt and breakfast after the 5k.  Same day registration is available however, t-shirts may not be available. Hope to see some of you there!  Let me know if you are planning on coming to support our Miss Miriam!

Date:  Saturday, September 25, 2010
Time: 8:00am                      5k starts
            9:00am                      Carnival begins
            9:30am                       Continental breakfast
            10:30am                     Buddy Walk
Location: Cedar Ridge Elemetary
4501 W. Cedar Hills Dr, Cedar Hills UT
Details: 5K, Entertainment, Carnival, Raffle, Breakfast! 
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Thank you to everyone who has donated to the Utah Down Syndrome Foundation.  Your donations really do help make our lives easier as families with children with Ds.  My most memorable time UDSF helped me was when I received a newborn package that was chock full of gifts for me and Miriam.  We received several books, clothes, a blanket, literature, calendar highlighting kids with Ds, and more!  This gift meant the world to me at a time when the diagnosis of Down syndrome was the only thing I could think about.  The funds with the UDSF have been low and I heard that we are no longer going to be able to give these gifts to new families because of the limited resources of the foundation.  It breaks my heart because I cried in gratitude every time I thought of the meaningful gift I was giving and that I was surrounded by a community of people who I didn’t even know yet.  I know how much that support meant to me and I wish the same for other families when they are embarking on this new adventure.  In the month of August, I had over 2,000 hits on my blog and if every one of those people (yes, I realize many were return visits) donated just a dollar, then we’d reach the goal I set for $2,000!

If you have a blog or website, we’d love it for you to share Miss Miriam’s fundraising page and widget.  Please let me know if you add it to your site because I’d love to link it here on this post.  Thank you to Kristina for the support you’ve given to us and adding Miss Miriam on your blog.  Kristina was my color guard advisor back in high school and this woman means the world to me.  I’ll add sites to the list when I hear back from you.  Thank you all for your love and support!

http://kristinaskrazykapers.blogspot.com/
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I have really hesitated to write about Miriam’s birth story – part three, the final story in my three part series.  As I looked back at Part One and Part Two, I realized it took me about two months in between each of those to finally get them posted so I guess I’m right on schedule!  The true reason though as to why I’ve hesitated is because sharing these stories takes a great deal of courage for me to share some of the deepest parts of myself and be so vulnerable.  Then why do it you may be asking yourself?  Quite simply it’s because I’ve been inspired time and time again that I need to share my story with other women.  As a caution to any new readers, it would serve you well to read Part One and Part Two of my birth stories so you are not totally confused.  This is the final of three separate blog posts about the differences in the births of my three children.  
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Feeding Miriam 07/11/2010
 
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Miriam is almost 15 months old now and I can’t believe how big she is getting.  We have been nursing since she was born and she is not showing any signs of wanting to stop anytime soon.  I am happy to continue nursing her because I know how amazing breast milk is, all the emotional benefits, and we just plain love our bonding time.  Since Miriam has Down syndrome it sometimes takes her a bit longer to learn a new skill but once she does, she quickly becomes a pro.  Eating solids foods has been a challenge because of her tongue protrusion which she usually just pushes the food right out of her mouth.  I’ve always been a fan of making homemade baby food and so around her first birthday I was still trying to give her watered down fruits and vegetables but she really had little interest.  I found it hard to have motivation to feed her solid food every day because she has little interest and didn’t even seem to care about the food in her mouth.  We have a family advocate with KOTM that comes out every month to work on goals with Miriam.  I talked to her about my concerns and we decided to seek help from an occupational therapist. 
I’ve gotten some great ideas from the occupational therapist, the first being to ditch the spoon when feeding her.  When I started giving Miriam food off of my finger she actually began to respond to it!  I want to keep her on as close to a whole foods diet as possible and so the therapist and I were thinking of some other foods besides fruits to feed her.  I was told that kids with Down syndrome typically enjoy strong flavored foods and that bland foods (like most baby food from the store) just doesn’t suffice their taste buds.  I started giving Miriam guacamole and hummus and feel as though I hit the jackpot!  This girl loves flavor! 
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We’ve been having so much fun feeding her lately because she is much more interested in food and excited to try new things.  She still doesn’t have any teeth so we are limited on certain foods.   In addition to her staples of hummus and guac, she also eats my cashew cheezy sauce, fresh produce, mashed beans, overcooked quinoa, soft and moist breads, and a few store-bought baby items as shown below.  I am reminded daily that just because her timetable is a slower than other babies, once she learns a skill she quickly masters it.  She is such a joy in our home!
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My dear little Miriam turned one this last weekend and I can’t believe how the past year has flown past!  She has been such a blessing in our home and we can’t imagine what life would be without her.  Her little smiles brighten our days and whenever we’re in a bad mood, simply holding her helps us to soften our heart.  She has a way of gazing up at you with her wide eyes that seems like she is peering into your soul and loving every part of you!  She is a determined little girl and we’ve seen her bounce back from heart surgery this past year with no problem whatsoever  (click on the link to see updated surgery pictures).  She just figured out how to get into a sitting position on her own and we haven’t even been working on that skill in physical therapy.  We are so thrilled with her progress and love watching her learn and grow.  She is such an example to us and we all love her so much.  I’m grateful for all she has helped me with this past year. There is something about having a baby girl that has really helped me to learn more about loving and accepting myself.  Thank you sweet Miriam for choosing to come to our family!  We love you!!
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We had a small birthday party for her and I found a cute little dress tutorial online that I made for her special day.  I made her a matching bow with some of the leftover fabric.  Since she isn’t eating a whole lot of solids I really didn’t want her to eat cake and all the sugar.  I ended up making her my date nut torte recipe and she liked it and as you can tell from the pictures, she got it all over herself!  
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Miriam's unscathed chest..just before surgery
We got home from the hospital on Sunday night from Miriam’s surgery and I’m relieved to finally be at home and to get back to my routine!  We went in around 7am last Tuesday morning to Primary Children’s Hospital and stayed up there the whole time with her. It’s like a whole separate world up there and I put everything on hold so I could focus on my little one.  I’m slowly transitioning back into the things I was involved in before surgery so I don’t stress myself out!
I decided that the three most difficult parts of the whole ordeal were;
1.   Handing over my baby to a complete stranger when it was time for her to go into the operating room
2.   Waiting while they did surgery, not sure what the outcome was going to be
3.   Waiting to be discharged from the hospitalThe wait and the worry before and during the surgery was pretty much torture for a mother.  I was physically in pain for my daughter and I was literally aching inside for what she had to go through.  I was pretty much a basket case until the surgeon, A.K Kaza came in to speak to us about the surgery results.  All the other surgeons came into the waiting room, sat next to the family and talked about the surgery results.  Dr. Kaza came into the waiting room and told us to come into a room with him.  I was freaking out thinking the worst because he didn’t just talk to us in the waiting room like the other surgeons.  He immediately could tell I was worried and told me to relax and that everything was just fine.
He told me that the surgery went well and he just wanted to talk to us alone.  They had to put her on a heart and lung machine while he did the repair and said that her heart was actually only stopped for 30 minutes while he made the repairs.  They took her off the machine and had to pace her heart with a pacemaker for a little bit but then she was fine and had no problems after that with her heart rhythms. 
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Miriam just after surgery
We were able to see her shortly after that in the CICU and even though she was hooked up to numerous machines, cords, and medication I was just relieved to see that she was alive!  I was anxiously anticipating for the approval that I could go ahead and breastfeed her and luckily it happened the very next day, about 24 hours after surgery.
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So happy to FINALLY be nursing
All of the doctors and nurses were amazed at how quickly she was improving and they removed her medications and machines she was hooked up to one by one.  The only concern after the third day was her oxygen levels as she slept at night.  Normal range is 90 and she dropped as low as the 60’s.  They monitored her for another day or so and we were finally discharged on Sunday.
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Happy to be done with all those machines
I’m so grateful for all the love and support from family and friends.  THANK YOU for your prayers and words of encouragement during this difficult time.  I am so grateful for the amazing advances in modern medicine that made it possible for a surgeon to operate on her heart!  They were even able to use her own tissue to repair the hole – isn’t that just mind boggling?  Thank you Dr. Kaza for your dedication and personal code of perfection in your work.  Thank you to those who came to the hospital and called to see how we were doing and wish us the best.  Thank you Miriam for your strength, courage, and faith that everything was going to be alright, even when your mommy waivered greatly.  Thank you to my dear hubby who stayed by my side the entire time and was a support to me when I was falling apart.  Thank you for your amazing talents and bringing your healing music into our family.   Thank you Divine Mother and Father for protecting my daughter and strengthening my family and I.  I’m so grateful that my baby did so well and she is on the road to full recovery!

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Heart Surgery 02/21/2010
 
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We have a date for Miriam’s heart surgery – March 9th.   It will be done up at Primary Children’s Hospital.  We don’t have a time yet and probably won’t until the pre-op appointment on the 8th.  The reality is sinking in today and I just want to curl up in a ball and cry.  The peace and confidence that everything will be alright seems very far away right now.  Please pray for our family, especially my little angel.

 
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Miriam Hope was born 9 months ago today.  I can't believe how fast time passes by.  We really had no idea what we had in store when I was pregnant with her and soon after she was born.  It was almost two weeks after she was born before I was shaken out of my state of denial.  After a loving phone call from my friend and midwife in the middle of the night, I had to face the facts...my daughter had Down syndrome.  As I had taken pictures of her I thought several times that she "looked" like she may have Ds, but the thought didn't ever really register in my conscious brain that she DID have Down syndrome.  Sure enough, a week later the blood test confirmed that our sweet Miriam, my first baby daughter, has Down syndrome.  Honestly, I was devastated.  I thought I was being punished, and that God was giving me some awful trial that I had to deal with.  I had a hard time for several months.  I had a hard time connecting with this little baby who seemed so foreign to me.  I remember when she first came out of me that she looked strange but I quickly pushed that thought out of my head.  What mother thinks their child looks strange??  Well I did, but I didn’t admit that until after.  After the unexpected news.  I had no idea what to do with this daughter of mine and was flooded with how I’m supposed to raise a child with “special” needs.  “I don’t need this in my life right now.”  I thought on more than one occasion.  

Oh boy!  How I misunderstood my daughter and that she is EXACTLY what I need in my life right now.  She has brought nothing but pure love and joy into our home since the day she was born.  I didn’t know what to do with her in the beginning and soon realized that I would “do” all the things I did with my other babies – take care of her!  Babies with Down syndrome still need to eat, get changed, diapered, swaddled, kissed, hugged, tickled, touched, smothered by siblings, bathed, sung to, rocked and loved.  Surely just because she has an extra chromosome doesn’t change the fact that she is still a baby!  So why did I think that God was punishing me in some way for sending her to me?  Really, I must have a warped sense of who God really is, because it’s ovbvious to me know that he wasn’t punishing me by sending my daughter to me.  Well I’ve had to work on and repent of that false belief!  God loves each and one of us and He doesn’t make mistakes.  My hubby has been really great to help me realize these things as well and has been extremely supportive and accepting of Miriam from day one.  I’ve come to terms with the fact that Miriam has Down syndrome and that she may have a different time table in regards to her development but she is still my daughter and for awhile longer by little baby girl. I’m sure as other parents have told me, I’ll have different stages in where I’ll need to come to terms with that extra chromosome again, but for now I’m at peace with my daughter and her differences.  

 She delights everyone who is around her and you can seriously feel her love by just holding her.  She is now more active and loves to grab your face and stare intently into your soul.  This girl is in spirit – she is intune – she has mastered the art of allowing.  Oh how we’ve forgotten that precious art as adults!  She loves to roll around and can move quite quickly from one side of the room to the other and we finally had to buy a gate to make sure she doesn’t roll down the stairs.  She is getting stronger everyday and I’m sure will figure out how to sit up soon enough.  She smiles, babbles, blows raspberries, puts everything in her mouth and loves being doted upon by her siblings.
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