Yesterday we celebrated Carmen’s 2nd birthday. MOPS (Mothers of Preschoolers) hosted Carmen’s Celebration of Life party at our church. What a wonderful time we had! I wasn’t planning to cry but of course I did. I don’t know the count but I think about 160 adults/kids attended. It was amazing to have people from all different walks of life together. Carmen’s pediatrician, physical therapist, Hospice workers, and night nurse were there. Also, old friends and new friends and friends Dave went to Peru with on a mission trip and my MOPS friends and neighbors and friends with Guatemalan kids and so many more. My mom, my brother, Dave’s parents and grandma and aunt came. Pastor Dale and Terry came and I think my father-in-law told them about Lauren marrying her dolls and her Raggedy Ann doll officiating as Pastor Dale!

As the guests came in, they were given cards to write a note to Carmen and then at the end of the party, we were given a porcelain box with the notes inside. Also, Dave’s parents were in a separate room filming anyone who wanted to say something to us and Carmen. We haven’t watched the video yet but I am really, really looking forward to hearing what everyone had to say. Although, I am afraid I will cry all over again.

Dave created a slideshow of Carmen with two Steven Curtis Chapman songs: “When Love Takes You In” and “I Will Take Care of You”. Of course, I cried at that too. The slide show stopped abruptly with a few pictures to go. Martina, I am sorry because the next picture was the one of our kids together!

We had several photographers, my friend Rashmi (who also came over in the morning and took pictures of our family, www.rashmipappu.com), Beth (www.sugarrushphotography.com) and Sara from Hospice. I am really looking forward to seeing pictures from the party! Check out Rashmi’s site for a few pictures of our morning session.

The party was pot-luck and we had some really great food! I didn’t think I would have time to eat but I did. Thanks to everyone who brought a dish!

Cindy, a fabulous cake baker/decorater, made an AMAZING three tier cake with butterflies and flowers. It was just perfect and sooooooooooo yummy! Thank you Cindy!

As the cake was being served, we had an open mic time and people got to say a little something. Pastor Dale, some of Dave’s fellow Peru trip friends, Dave’s dad (who cried) and other friends got up and said something about Carmen and our family. It was so wonderful to hear people say how much Carmen’s life has impacted them. When we first found out Carmen was sick, our goal was to make her life count. And, we knew the only way to do that was to share her with others. I am so glad we are doing that.

The MOPS moms also handed out Carmen’s bookmark/prayer card. Rashmi printed a bunch for us. Thank you Rashmi! I have some left so if anyone would like one, please email me at blog@beautifulcanvas.org.

Carmen slept through the whole party. About an hour before the party, she was having a seizure and I gave her a very small amount of Ativan. Well, she slept and slept. Through her party and then through the night and most of the morning. At least she was comfortable and content for her 2nd birthday!

Carmen wore an adorable orange Naartjie dress and a matching bib from Cathy (cjbs51 on ebay). Cathy sent Carmen two bibs in hopes that one would match her birthday dress and one matched perfectly! Thank you Cathy! I highly recommend Cathy’s bibs. Carmen wears the toddler size and they are wonderful.

The whole Celebration of Life was just wonderful. Thanks again to everyone who helped and to Rachinee who pulled it all off! Thanks to everyone who came and celebrated Carmen’s life with us.

And a big thank you to my friend, Lori, who came over last week and cut Carmen’s hair, Lauren’s hair and my hair and also highlighted my hair. For the party, Lori straightened my hair and I just loved it! Now, all of you who know Lori, call her and schedule an appointment! (I promise, she is very good!)

Carmen had her 2 year check-up today. She continues to have frequent fevers and lung infections. And her seizures are increasing in frequency and duration. But, overall, nothing major was going on today. I was very relieved when Dr. Pedreira said that we did the right thing by going with Hospice and signing the DNR (do not resuscitate). We have not seen him for several months and did not know his thoughts on the direction we are going with Carmen. Dr. Pedreira has great wisdom and we respect his opinion. We thought we made the best choice for Carmen but it is always good to get confirmation.

I end this by asking for your prayers for the Anderson family. Charles passed away July 19th. We met Charles and his family at the Tay Sachs conference in March. If you have a moment to leave the Anderson family a message, here is Charles’ website, www.caringbridge.org/visit/charleslee.

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Last night we had a wonderful time with our friends Ted and Karen and their kids. Dave is becoming a master griller! The secret’s in the sauce!!! (Anyone see Fried Green Tomatoes!?) I have two favorite marinades and I’ve tried a ton of them and made my own. But, these two are the best, in my opinion. McCormick Grill Mates Tomato, Garlic and Basil Marinade and McCormick Grill Mates Hickory BBQ Marinade. You add olive oil and vinegar to the dry package mix and marinate the chicken overnight. Yummy!!!

For summer I LOVE salads. My friend Karen brought a salad last night that I really could eat for every meal.

Karen’s Delicious and Nutritious Everything-in-the-Fridge Salad

Mixed greens
Grape tomatoes
Canned black beans, drained
Canned corn, drained
Cucumber, sliced
Onion, sliced (I like Vidalia)
Green onions, diced
Black Olives
Cilantro

Dice or chop whatever needs chopping and mix everything together. No need for salad dressing as the corn and beans add a little bit of moisture. Enjoy!!!!

Big thanks to my friend Cristie who picked up Carmen’s birthday party invitations yesterday! You are thoughtful and kind and congratulations on finding out you are having a BOY!!!

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We had a very busy week. I like staying busy when it is fun busy!

Tuesday we went to Brookside Gardens with a friend. I have wanted to take the girls and actually had a trip planned a few weeks ago but wasn’t able to go. This time we made it there and had a wonderful time. Lauren got to ride the carousel twice and we had a nice picnic. The weather was perfect and it was so nice to be outside.

Wednesday my friend Kerri came over from Virginia with her three kids and we had a fun visit. We have been friends with Kerri and her husband for 8 years. Hard to believe! The first Sunday they visited our former church, we invited them over for a Super Bowl party that night. We’ve been good friends ever since.

Thursday we went to a Cookie Lee jewelry party. My friend Lori just started selling Cookie Lee and this was her first party. I told the hostess that I hoped it was OK if we stayed for awhile. Once I get somewhere with Carmen and all her equipment, it is easier to stay! She assured me that it was fine so Lauren played with the other kids and I looked at jewelry and sat with Carmen. I ended up buying a really pretty silver rose necklace and a pair of silver hoop earrings. The earrings are big and out of my comfort zone but I am trying to be bolder! You only live once, right?!

We are planning Carmen’s 2nd birthday party! More details to come!

Hope you are all having a really great summer!

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With much sadness, I share with you that another Tay Sachs child has passed away. Bryan, a beautiful 6 year old boy, passed away May 18th. He is in Heaven now with his older brother, Brandon, who died in 2005 at 5 years old from Tay Sachs. We ask for prayers for our friends, Mario and Marlin who have endured more than we can imagine. Mario and Marlin are Guatemalan and we had the absolute pleasure of meeting them and Bryan in March at the Tay Sachs conference. They traveled from Guatemala to the conference in Florida. We pray for God’s love and comfort to surround them as they go thru this very painful time.

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We took Carmen to the ER last night. After 3 doses of Augmentin for ear infections, she broke out in a rash from head to toe, literally covered in spots. Her breathing was more labored than usual and then her oxygen went down. I gave her oxygen but her levels stayed low. I called Alice, a nurse I know from church, and she came over. She felt that Carmen needed to be seen so we took her to the ER and she was admitted. Hopefully, she will get to come home tomorrow. She is doing much better today after IV antibiotics, a ton of nebulizer treatments and oxygen.

We really hope to be able to keep Carmen home and out of the hospital. I am going to talk to her doctors about getting everything possible in our home so that we can treat problems as they occur and avoid ER visits! Dave especially is concerned that all the hospital visits are unfair to Carmen- she gets poked and prodded and kept awake. And, it’s so hard on Lauren to have me gone.

One funny thing that happened in the hospital: we were waiting in the ER and a receptionist found us and said that a lady named Shar from Church of the Redeemer was on the phone for me. I thought, “How could Shar have possibly known we are at the emergency room?!” I asked and Shar said that she called our house and we weren’t there so she tried the hospital and there we were! Shar and Rick came up to the hospital and then Shar stayed with Carmen and me until 3am! Thank you so very much, Shar. You did NOT have to do that and I did keep trying to send you home. But, it was wonderful to have company and I enjoyed our talks!

Please keep Carmen in your prayers. We hope she is home ASAP.

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A couple of weeks ago I had the privilege of sitting down with a friend and her boyfriend over lunch. My friend’s boyfriend is an independent contractor for a large software development company. For the past few months, he’s been wrestling with some professional and personal questions. Since I was an independent contractor for four years before choosing a different path, he wanted to get my thoughts on a few things.

It was a great conversation but, to be honest, I am pretty sure that I got more out of it than he did. About 45 minutes into the discussion, he said to me, “It seems as though you’ve changed a lot in the last few years.”

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As many of you know, Lana, Lauren, Carmen and I went to Florida last weekend to attend the annual Tay Sachs Association conference. It was great to connect with the other parents. It was also nice to wear shorts and t-shirts in March! At the same time, it was really tough to see the progression of this disease in the other children. It was also hard to see so many other parents struggling with all that this disease entails and what it means for their children and families.

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I was reading Psalm 15 this morning while eating breakfast in Carmen’s hospital room. I love this chapter and read it often. I cannot adequately explain this passage but here is my summary, what I get from it. Do I want to be close to God? If so, I must pursue true character, which can only be found in God. If I really pursue the character of God, I will not be shaken by the painful events in life.

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Like many of the other parents whose children have degenerative diseases, I wrestle with the realities of it and wonder, “Why Carmen? What did she do to deserve this?”

There was a time in my life, not too long ago, when our current situation would have crushed me to the ground. There would have been little left in me except bitterness and anger, little left of me except of pile of rubble.

While I am far from a person of great character, I do recognize some of the changes God is making in me as I pursue Him. It seems as though you’ve changed a lot in the last few years. Yes, that is true. I have changed in the last few years. More accurately, God has changed me a lot in the last few years. And I am extremely grateful!

That is a truth that I overlook all-too-often. I am not yet the man I want to be but praise God that I am no longer the man I once was (my paraphrase of Martin Luther King Jr.). Thank you, Lord.

Thank you Chris, Eric F., Mario, Andy, CF, Eric K. and many others who have reminded me recently that God is up to something…and we are all invited to participate. God is up to something in me and through me.

I can’t wait to see it unfold!

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Congratulations to our friends, Kerri and Lee, for their new arrival! Seth Thomas was born on Sunday and joins big sister Corinne and big brother Drew.

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I mentioned the “friend-raiser” that Ritha, Salih and Bianca hosted last week. Well, we got the total- $1100! Thank you so much! It meant so much to us that you did this for Carmen. Thank you again to Lucia and Rachinee who donated their profits. And, thank you to all of Ritha’s and Salih’s friends who generously donated.

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First of all, the good news is that Carmen’s increased seizure medication (Keppra) seems to be helping. For the past few months, Carmen has been on a very small dose of Keppra. Over the next few weeks we will gradually increase the Keppra dose. She is still having daily seizures but they are not quite as intense. We now have Valium on hand for emergency use when Carmen has a seizure that won’t stop.

One of the ushers at our church asked us to come early today so the ushers could pray for Carmen. We managed to get there on time (you would think living 1.75 miles away would mean we could get to church on time!) and the ushers prayed for Carmen. Thank you, Gary, for arranging this. It meant so much to us!

Pastor Dale concluded his “Heaven Hope Us” series today and talked about Heaven being a place of joyous reunions. I think that after Carmen dies, Heaven will seem so much more real to me, a place I yearn for. Pastor Dale also talked about young children going to Heaven. In Carmen’s room, we have a wooden plaque with Matthew 19:14, “Jesus said, ‘Let the little children come to me, and do not hinder them, for the Kingdom of Heaven belongs to such as these.’” I love this verse. I bought this plaque several years ago in Lancaster, PA at an Amish shop. I picture Carmen running and playing and laughing in Heaven. What a wonderful hope!

After church, we went to our friends’ and former neighbors’ house, Salih, Ritha and Bianca. Ritha called me a few days ago to tell me that she was hosting a PartyLite candle party for Carmen thru Lucia, a PartyLite consultant. So, imagine my surprise when we pulled into our old neighborhood and Rachinee’s car was in Ritha’s driveway! (Rachniee is the Cookie Lee jewelry consultant who hosted Carmen’s first “friend-raiser” last month.) Ritha and Rachinee had gotten together and decided to do another “friend-raiser.” So, today’s party was a combination of candles and jewelry! Oh, and yummy food, of course. Salih made his famous guacamole. I could eat that guacamole every single day! Thank you so much Salih, Ritha, Bianca, Rachinee, and Lucia! It’s fun having friends from different walks of life all together! To Ritha’s former boss: We enjoyed talking with you and thank you so much for sharing your daughter’s story.

Last thought for today: many of the families affected by Tay Sachs and similar diseases raise money for education and testing and a search for a cure. As of now, Dave and I don’t feel a strong pull to go this direction. Instead, we are praying about helping people adopt. I have this dream that starting in a few years, in Carmen’s honor, we will raise money to pay for one international adoption per year. This seems huge as international adoptions are often $30,000+. But, I can’t think of a more wonderful way to make Carmen’s life really count than to help families bring home 30, 40, or 50 kids in our lifetime. This is something that we would never have thought to do had Carmen come home healthy. If God is in this, then we believe He will provide a way.

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We had a wonderful time at our Cookie Lee Jewelry friend-raiser benefit party for Carmen! Old friends and new friends stopped by and it was just great to see everyone. We are so very grateful for Rachinee and her hugely generous heart (you inspire me, Rachinee!) and all who are taking part in this journey with Carmen. I don’t know the specifics yet, but Rachinee had such a good turn-out and lots of sales. In my opinion, Cookie Lee jewelry is great- it’s really cute and reasonably priced (adding my advertisement for Rachinee!). Thanks to Azeb for the lovely orchid set. I will cherish wearing it! And, thanks to Karen for the princess crown for Carmen and the ballerina necklace for Lauren! And, thanks to Dave for the Valentine’s Day gift that I ordered for myself and that he hasn’t seen yet! Hee! Hee!

A wonderful friend came to the party and gave us a very generous gift. You know who you are and thank you so very much!

Yesterday, I drove to Bethesda to pick up Carmen’s ankle braces. However, the braces are not the right ones, so a rush order is being done for adjustable ones and Carmen should have them in a week or so. It was an unproductive visit but Monica (a Hospice volunteer who came along with us) and I had fun laughing about the ridiculous parking situation and the little old lady who took our handicap parking space because she was going the wrong way down a one way and got there first!

We got a delivery yesterday- a pulse oximeter and oxygen machine and tanks. Carmen’s breathing sounds so labored at times that her pediatrician felt we should have oxygen available.

This morning, Carmen and Lauren got a package in the mail from a wonderful family in Ohio! This family adopted a beautiful little girl from Guatemala. I followed their story and blog because Carmen and Mikayla are about the same age and we were in the adoption process at the same time. Their son, Alec, made Build-A-Bear stuffed animals for the girls. He made a white puppy with red hearts for Carmen and a bear with a pink/black polka dotted dress and pink bows for Lauren. Thank you so much to this wonderful family and especially to Alec who brought big smiles to Lauren! Carmen cannot see much so I love to have soft things for her and the puppy is just perfect!

Thanks to everyone who has signed our guestbook. We love reading the messages!

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