I’ve wanted to write about this for a while now…about a year or so, I guess. I’ve tossed words around in my head to try to figure out the best way to say it and hesitated to even approach the subject for fear of being misunderstood, labeled or categorized as “an emotional mom.” I can’t keep it in any longer, and March 31 gave me just the thumbs up I needed to get started. So, here goes nothing:
On March 31, across the United States, people on college campuses, in high school cafeterias and workday offices have launched the “Spread the Word to End the Word” campaign. The goal: make people stop and think about their hurtful and disparaging use of the word “retard” or “retarded.”
How many times do I sit down and think, “I should really post an update…but I’m too tired and once I start writing, I won’t want to stop.” Here I am though- Ella is up to something upstairs and Seth is sleeping. Let’s see how much I can update you in 5 minutes:
-Seth had a cardiologist appointment two weeks ago today (thus the “coming out of sedation” picture on the blog earlier). He was born with two small holes in his heart- better known as heart murmurs- a PDA and an ASD. (All you cardiologists out there will know what I’m talking about!) Anyway, they gave him some “happy juice” for a sedated echo to check out the little dude’s ticker and glory to God!!!, both holes are closed and everything is working well! We praise God for this- and give Him all the credit for healing Seffy’s heart. The cardiologist mentioned he has one small leaky valve- the “tricuspid valve” to be exact….and that we should come back in at age five for another look. According to him and stuff we’ve read- it’s not a big deal at all and should never affect him long-term. Thank you, Lord!
-Ella is responding well to discipline. After working through Dobson’s “Strong-Willed Child” with a fine-toothed comb, I began to parent differently. I know that each kid is unique and responds better to certain things, so with some trial and error, she no longer has me pulling out my hair and looking for the great escape route by the end of the day! I’ve thrown in the towel on the clothes (she won’t wear them at home) and food (if you want to eat it, great- if not, we don’t care). “Pick your battles!” say all the experts and while Joel and I truly thought we were picking our battles, it turns out we were still picking too many. Anywho- I think we’re turning a corner here and the majority of our day together at home is pleasant- hec, it’s fun! Another huge praise God!
-Seffy started crawling! Can you believe it? Therapists told us not to expect him to crawl until he was about 18 months old, but look who decided to do it in the last week of his 10th month! Go, Seffy, Go!
-“Ma Ma Ma Ma Ma!!!” are the sweetest words I’m hearing right now. Yes, Seth is looking at me and saying “Mama” (or at least his form of it)- both daddy and Nanna agree with me that he knows what he’s saying and understands it is my name. And they told me he wouldn’t start talking until he was two….
–Baby sign language? Yep. We’re doing that too. I sign several words to him: eat, more, drink, thank you, in, out, play, please. Guess which one he’s starting to sign? EAT! But of course! At a whopping 20+ pounds, food is at the top of his list and he was quick to pick that one up. The boy scarfed down two whole pancakes for dinner the other night without a drop hitting the floor, his chair or his bib. Nice fine motor skills, brother! Your OT is proud…and he’s just mastered his first sippy cup last night. On to drinking from a straw….
-Cognitively, my therapists have told me that Seth is really smart. I just can’t tell you how that makes my heart swell. In one conversation, a therapist told me that one of the greatest misconceptions of children with DS is that they are not smart. Quite they contrary, while they may learn differently from others and have some form of cognitive delay, they can be brilliant just like any other child. “And this little guy,” raved the OT, “is at the top of the curve. He is one smart cookie.” There are no words.
-Joel made it home from his tour-de-Europe. Amsterdam, London and Paris- what a tough life! He would call from Paris and rave over the crepes, while I was home eating PB&J. Aw- I don’t begrudge him one minute of it- Joel works hard and the Lord is blessing him for it. He had a great trip and brought home presents for me and the kids. Thanks, daddy!
-Our Aussie friends, Jamie, Gillian and baby Violet (well…..Toddler Violet now) are coming in town for a visit April 19th through the 26th. We can’t wait to see them as it’s been about 2 years since we were with them last.
-I joined a local group, “Moms of Kids with Down Syndrome” and found a neat group of women to walk through this journey with. We laughed, exchanged stories, encouraged one another and just celebrated every little thing each of our kiddos can do. There was a sweet spirit in the group and though I don’t think everyone was of the same faith, I felt that I could freely talk about the Lord and what He’s done in our life. I see that this is part of my ministry and I will boldly accept the challenge.
-Our nephew Tate has a big walk for “Autism Now” this weekend. While the kids and we won’t be able to join them in San Angelo for the big event, we’re pulling on our T-shirts and hitting the neighborhood for a good walk to support the awareness and research as it relates to helping kids affected by Autism. We love you, Tate, and you are important to us!
-Ella loves to play “house” now and she’s always the mom, I’m the kid and Seth is called, “Baby Joy.” I can think of nothing more appropriate. Ella’s imagination is vivid and I’m starting to hear her sing when she’s playing by herself. It is the most beautiful sound I’ve ever heard. She is a sweetheart big sister and enjoys finding ways to make Seth laugh and, of course, tell him what to do! He’s thrilled to be around her most of the time. They love wagon rides together around the neighborhood and a favorite game is for Ella to build a wall of pillows around Seth and see if he can escape. According to his PT and OT, this is a GREAT game for his physical development. Ella may just grow up to be a therapist!
-Sarah painted verses in both of the kids’ rooms. They are perfect and I’ll post pictures soon! Ella’s is Psalm 104:33- “I will sing to the Lord all my life.” Seth’s is Exodus 15:2- “The Lord is my strength and my song.” I LOVE walking in their rooms and seeing the Word of the Lord that we pray over their little lives. Now if I can find something for their bathroom….”wash me and I will be whiter than snow???”
-I LOVE our new home and neighborhood and little town. Everything about it feels like home to me. I met the neighbors behind us, who are actively involved and on staff at a big church in town. They have kids the same age as ours and are neat folks. Another blessing!
That’s about all I have time for right now- we’re doing great! Thanks for your interest in our family and thank you for letting me brag on Seth- I just can’t help it. Joel and I commented just the other night- had we known how wonderful this little guy would be and how fascinating the journey, we would have had no anxiety or stress at his birth. We would have just loved every minute of it as we did Ella’s. BUT! We see the purpose of the Lord….and we’re SO EXCITED to celebrate his first birthday just one month from today. I can’t believe all he’s accomplished and all of the “statistics” and “odds” that he has beaten. Every day is a blessing and every little thing he does, we celebrate!
Let everything that has breath, praise the Lord!