So today’s letters are not quite as in depth as the last…. Actually, they are rather shallow. =0)
“I” is for iPhone and iPad – I am thankful for my iPad and iPhone! I absolutely love my iPhone. I am amazed at how spoiled I am. I have access to anything and everything at my fingertips. I love the internet access and the navigation! I also absolutely LOVE my iPad!! It is takes over for my phone once I get home. (I just wish I could text on it, then it would be complete). It is also great for watching movies and TV series (thanks to Hulu and Netflix). My FAVORITE thing about the iPad is the usefulness for Sydney! We have a ton of apps that she uses. She has four folders of apps and she loves it. Of course Anthony does too. I frequently have to pry it out of their hands.
“J” is for Jeans….. skinny jeans that is!!! I am so happy to say that I am back in my skinny jeans (YEAH ME!!) And I LOVE LOVE LOVE that feeling!!!
I told you today was shallow!
I am thankful for HOPE. Without Hope, there is nothing. I have hope in the future becuase I have hope in my God. In the last few months I have realized that hopes change. What you may hope for one day may become completely irrelevant the next. When life hands you major shifts, you have to adjust your hopes. One hope that remains the same is that my children grow up happy, healthy and know love!
This blog was created to show how it takes Down Right Faith to thrive with the diagnosis of Down syndrome. In this time of my life as I am in the middle of a separation with no understanding of what the future holds for me and my family, it is brings me back to 4.5 years ago when the future was uncertain for a different reason. We didn’t know what Down syndrome was going to mean for our baby, for us as parents, or for our boys. We tackled that uncertainty with faith… so as we go through this next transition… I will go back to that same guiding light… Down Right Faith.
So in the light of November and the impending Thanksgiving, I am going to echo many of my friends who are writing daily posts of what they are thankful for in this month of Thanksgiving. I am going to add my own little twist and do the ABC’s of Thanksgiving. Since I am starting late, I need to catch up. =0)
A – Anthony, my sweet sweet boy! I couldn’t adore him more!
B – Boomer – Yes, my goob of a dog. He has been my shadow and my ever present comfort
C – Christ – I have been in a valley for sooo long and I can finally feel his presence and peace!
D – Dell – I am so thankful for having a good job and wonderful people to work with. Don’t get me wrong, the job is kicking my tail right now, but it is a blessing of focus and financial support.
E – Evenings – Although I rarely rest since there is always work to do for either Dell or DSACT, the evenings provide a chance to breathe
F – Friends - I have the most AMAZING friends on the planet. I cannot imagine my life without them
G – Grace – I have felt God’s grace over this time.
I will end today with my favorite bible verse and my plumb line:
6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. – Phil 4:6-7
It is Buddy Walk time again. It’s hard to believe that Sydney is 4 years old and this will be our 5th Buddy Walk! Her first Buddy Walk was when she was only 3 months old. Wow, time flies. This year Sydney will walk on her own for the first time. No stroller! Although I have no doubt that she will bat her eyes and get some of her friends and family to carry her for parts of the one mile walk.
Take a walk down Buddy Walk memory lane HERE.
We would love for you to walk with us or donate to Sydney’s team at
I went to the pool with the kids today. Sydney was a dynamo. At first she wanted her floaties/life vest band on as usual. Today she was feeling adventurous. She hung out in the kiddie pool for quite a while. It was the first time she really took an interest in it. Usually she just wants to be held in the water, but today she was little Miss Independent. She explored the kiddie pool for quite a while and then gained interest in the steps of the big pool. The big step was when we got the life vest back on and we went out into the bigger part of the pool and she held herself on her own without my assistance. YEAH Sydney!! Now, I must explain that she only did this when she wasn’t aware that i had let go. As soon as she realized that I wasn’t holding her, she gave me the fake fuss and stiffened up and grabbed me anywhere she could reach.
The trick to getting her to stop paying attention to me was giving her a small rubber ball to throw. She was so busy paying attention to throwing the ball and “swimming” after it, that she no longer was worried if I was holding her up or not. As long as she kept her legs below her or behind her, the lifevet would hold her beautifully. When she struggled or tightened up, she would topple and go under.
The other BIG step was her leaping into the pool to me without me holding her hands. She was launching herself a good two feet out into the pool. Good girl!!!
Little Miss Sydney is now 4 years old. Wow, where did the time go? With her birthday, she has really turned a corner in her speech. We were at dinner recently and realized that we were having a full blown conversation with Sydney. It wasn’t a series of labelling items and describing them. This was an actual exchange of ideas!! Sydney is the queen of sitting on the edge of a milestone for what seems like FOREVER! Then, when you least expect it… or just plain forget about looking for the next step is when she leaps over the milestone and never looks back.
The joy in her talking is that she can be understood by people other than the family. Woo hoo! I am excited to see if she keeps going when she gets to school in the fall. She was well known for NOT TALKING at school.
No this isn’t a post about my widow-ship to my husband’s iPad and iPhone. It’s about my desire to “program” my brain. A computer does exactly what it is coded. Unlike a human will which is flakey and weak… well at least mine is. Oh to be able to program my brain to do this and like that… You get the point. My programming would look something like…
Enjoyment = Excercise + 8(glassesH20) + 8(SleepHours) + Prayer[(study)+(faith-doubt)] – [(sugar) - (carbs) - (chocolate) - (diet coke)] – worry
Doesn’t that sound delightful? There is nothing in that equation about exhaustion, distraction, etc. Unfortunately my natural brain is not programmed to LOVE exercise or despise junk food and my genetics did not provide a rock star metabolism.
So, I guess it’s the hard road of Will power for me and most of the world. So in the meantime I will work on my diet, try to find ways to get some excercise in my life and time to pray daily.
It’s a long life, so I guess I better get started. Wish me luck!
Fathers are special, there is no doubt about that. My father is AMAZING! He is the smartest man I know and has a heart of gold. I have learned so much from him. This blog post however is aimed at the fathers who have children with special needs.
Being a father is tough enough. You start your job as a dad by standing on the side lines and cheering on a mom-in-the-making while she struggles to bring your child into the world. Although the birth of a child is a life changing event and full of joy, it also brings worry, anticipation, fear, and uncertainty. These feelings are elevated when your child has special needs.
We have three children so Randall is a father with three different angles. His first son Zach was born before he knew me, so due to life’s twists and turns, he only gets to be with us on a part time basis. This has been a challenge to ensure that he feels loved and an equal part of the family in spite of the split households and the limited time together. Then 4 years later he watched his second son Anthony come into the world. Now he was a full time dad and this son has a completely different personality and put the household on the run due to his Energizer bunny rabbit energy! Then another 3 years later he finally became the father of a little girl, Sydney.
This time the journey into fatherhood was different than the first two because early on in the pregancy we discovered that she has Down Syndrome. This made the excitement and anticipation of pregnancy tarnish a bit, well at least for a while. Suddenly fatherhood brought fear, worry, uncertainty and concern. What did all this really mean? How would life change? Suddenly fatherhood had become scary. Additionally, he had a new role thrust upon him, “being the rock”. His wife had become fragile emotionally and physically. The trek through the remaining months of pregnancy was riddled with concerns and problems. There were ER visits, separating hips, months of bed rest and finally a premature birth that was something only seen in bad sitcoms. The final stretch into fatherhood forced my rock of a husband to drive his wife to the hospital at 2:00am with contractions only 1 min apart! Trust me when I say that we barely made it in time to deliver!
In the last four years since this episode, Randall has had the role of a dad, just like every other father in the world, but with the added role of a dad of a daughter with special needs. So what makes this kind of dad different, and special? Because in addition to the typical role of dads, there are special assignments that these dads have:
- Balancing the feelings and attention of ALL of the children.
- Making all of the kids feel special in their own ways
- Keeping an extra eye on the future for the child with special needs
- Listening to mom worry about the “what ifs”
- Supporting mom while she goes to all the Special needs trainings, programs, workshops, (board meetings) or attending with her
- Going over IEPs, Attending ARDs
- Reaching out to other families of children with special needs and sharing their stories
Randall especially, you are amazing because of all of this plus you are a fabulous First Guy!
- You are a wonderful “First Guy” and support me as President of DSACT
- You listen to me worry, rant, discuss, and dream about making the organization grow.
- You have supported me in my need to be involved for the last 3 years
- You jump in and volunteer whenever there is a need!
- You are a fabulous support and share your heart with other families without hesitation.
- You make Sydney feel like a princess and the boys know that you LOVE them dearly
- You have a strong faith that you share with our children
- You are the love of my life!!
To all the dads out there, especially my dad and my husband, HAPPY Father’s Day! To all of the dads of special needs kids, a special shout out to you!
Another Anthonyism… It’s been a while since I have posted one of these. Anthony and I were in the car yesterday and here’s how the conversation went:
Anthony - Mom, what’s zombie ash?
Me – What?
Anthony – What is ZOMBIE ASH?
Me – Zombie Ash?!?
Anthony – Yes! Zombie Ash!?!
Me- (befuddled….) What makes you ask that?
Anthony – It was on the song, “I am such a zombie ash”
Me – (pondering song “Firefly” then realizing what he heard…) Oh, no baby he said I am just and insomniac!”
Then I had to describe what an insomiac was. I love how his brain works! Anthonyism are great. It was right up there with camel squash. =0)