We took Seth to the ENT on Monday and an ear infection in his left ear hasn’t cleared up after months of drops and treatments. (It’s a”chronic” ear infection.) So, he’s going to get a new set of tubes on Friday morning at 9am- adenoids taken out also to help with his breathing and sleep apnea- and a weekend stay at the hospital where they’re going to keep him on an IV to run strong antibiotics through his system to try to clear the ear infection once and for all. What’s more, the ENT said, “Do me a favor and keep him out of the church nursery for a while. We’ve got to keep him well.” So! That kind of changes the way we’ll be doing things at church (guess he’ll have to learn to take notes sooner than later).
Many children with Down Syndrome have compromised immune systems, and we’re finding that Seth is no different. When they catch a cold or virus, it stays in their bodies longer due to smaller airways and nasal passages. That seems to be the case for Seth- and now it is settling in his nose and ears, which will ultimately affect his hearing, speech, etc. What a reminder of how intricately the Lord has knit us together! Joel and I keep saying that it could be so much worse- it’s just a season in life and we’d rather it be his ears than something even more complicated. However, I feel anxious about putting him in the hospital for the weekend (thinking about all the germs, flu, etc), but according to the doctor, we really have no choice with the ear thing. Please just pray with me protection over him during anesthesia and surgery- a full recovery- complete healing and restoration of hearing in both ears- rest for us while we are in the hospital for however long it will be- fun and peace for Ella girl while we’re away for a while- and peace for a nervous/weary momma. I know the Lord is in full control~ how many times do I preach that to other people? And how many times will I continue to be tested in it? It’s just so hard some times to keep that top of mind when you are literally walking through the trial! I’m reminded of this promise the Lord revealed to me when I was pregnant with him: “And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To Him be the power forever and ever. Amen!” ~1 Peter 5:10
I will be anxious for nothing- I will pray without ceasing- in everything, I will give thanks! Thanks for praying for us….we will keep the blog updated.
We celebrated your first birthday this weekend with all of your family and a few friends. More than just a birthday party, we celebrated your life. You’ll never know what a blessing you are to us. If only we’d known how good this year would be, there would have been no doubts, no fears, no worries.
I knew you were special the minute I laid eyes on you, and that was something I’d prayed and asked the Lord for. Nobody had to say a word to me- I announced to everyone in the delivery room that I knew you were special and they all silently nodded. My doctor said you were sent to the right parents for sure. Everyone in the delivery room handled you like a china doll- and there wasn’t a dry eye in the room, but there were a lot of smiles too. All your daddy could say was, “He’s a good boy. He’s a good boy, momma.” The doctors told us you were really strong and a healthy boy. You had a good cry, just like Ella did when she arrived. The next thing I said was that your name would be Seth Joel- which means chosen by God and our doctor said he could think of nothing more fitting. Then I proclaimed the truth- “Blessed be the name of the Lord!” with tears streaming down my face and my chin quivering.
I’ll never forget the feeling I had when the nurse handed you to me, just minutes after you were born. She told me that God had special plans for your life, and she was certainly right. You were wrapped up so warm with a soft little hat on your head- those beautiful blue eyes of yours were wide open, taking everything in. I held you so close and started to talk softly to you- telling you how beautiful you were and how excited we were to finally have you. You cooed right to me- and immediately, I knew we were going to be okay. You see, I fell in love with you in that moment….your daddy did too. I sang to you a little bit, which you were already accustomed to and still love. Then one by one, as we introduced you to your big sister Ella, your Mimi and Poppa, Nanna and Pappy and aunts and uncles, they fell in love with you too.
You are a special boy, Seth. We love you just as much as we love our Ella girl- you are both our favorites. Ella thinks you are pretty special too. She calls you names like, “Baby Joy,” “Seffy-too-tiger” and “Wookey.” She came to pick you up at the hospital when you were born and couldn’t wait to hold you…she still talks about that day. She’s mommy’s big helper and she’s also your helper too, Seth. We’ve talked about how she will always take care of you and teach you new things; sure, you may fuss at each other every now and then, but she loves you so tenderly and always will. I can see how God made you both so differently and how you will help take care of her, too. You help Ella to slow down her pace a little bit- she’s learning to be patient, and can’t wait for you to learn to say her name.
You’ve taught me how to love better. I’m not afraid of things that are “different” like I used to be. I find myself going out of my way to get in line at the grocery store with employees who are special too. I am learning to cherish and appreciate the little things. I am enjoying each day for what it brings more and more. I see beauty in all kinds of faces, shapes, colors and smiles. Your little arrival has softened me. I am more compassionate and quicker to hold my tongue, less inclined to criticize. I love your daddy more because you’re part of him, too. He’s so proud of you, he could just pop sometimes. You’re his first son, Seth…and I know that he wouldn’t trade you for all the boys in the world.
I love your smile and the way your eyes turn into little rainbows when you get excited to see me enter the room. I love to hear you say, “Mama.” I love how you get so tickled when we play “kissie-kissie” and I loved how you wave your arms when you get so excited about anything we’re doing together. I love how you wrap your arms around my neck as tightly as possible and squeeze me with an “Mmmmmm” whenever we hug each other. I loved it the first time you crawled, slowly but steadily, right into my lap because you just wanted to be with me. I love that you need me because, Seth, I need you too.
Seth Joel- chosen by Jehovah God. You are a joy and a love to all who know you. I am so proud of you.
I’ll love you forever- I’ll like you for always- as long as I’m living, my baby you’ll be.
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!
TODAY, March 21st, 2009, World Down Syndrome Day is celebrated by families and friends across the globe to mark
the 50th anniversary of the publication of Professor Jerome Lejeune’s
discovery of the extra copy of chromosome 21 which causes Down
Now known as trisomy-21 because of the third copy of
the 21st chromosome, Down Syndrome was first described by the English
doctor, John Langdon Down, in 1866 but until Professor Lejeune’s
publication in 1959, the ultimate cause of Down Syndrome was unknown.
I’m thankful for this unique and precious chromosome 21 that makes our little Seth, and countless others, the precious, perfect gifts they are! The Fun House is celebrating life today!!!!
Seth is starting to pull up a little. He enjoys it. Don’t worry, we are working on crawling first. Some who read this blog (you know who you are) would be very worried if I didn’t say that.
Praise God for what He has done and for what is yet to come!
Well, I guess it’s time for an update from our crew- I can’t remember the last time I wrote something!