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4.27.2012

March 3-4: a weekend of celebrations!

Mar 3, 2012: GG’s birthday party
This weekend consisted of two very special celebrations. First, was Great Grandma Bea’s birthday. Grandma is the only “great” grandma the Jayden and Brooklyn still have this side of heaven and we are so blessed to have a relationship with her. It is still a bit sad to think about her getting older and things changing, but such is life, right? We have learned once again the lesson of just enjoying what we have in the moment. (GG with Sarah at Jayden and Brooklyn's birthday)

 Mar 4, 2012: Kate’s Shower
The next day, after years of watching a dear friend journey down the road to parenthood, we finally were able to celebrate with Kate and Mark the newest addition to their family. They adopted a little girl, Lydia. She is a beautiful princess with dark hair and precious eyes…when they’re open…. And I loved the “new baby” smell as I held her. We are so happy for Kate and Mark!



4.25.2012

Feb 25, 2012: our Parents Christmas gift

The older I get, the more I want to create memories and give gifts that create memories, instead of the picture frame, candle,  trendy something or other that ends up getting tossed in a year or two.   Now, I am not great at this yet, and I always think people would rather get a “real” gift, but I went out on a limb this year with our folks and thought I would give them a “memory”.   So, we had our dear friends, Jason Alm, who is an amazing chef, and his fabulous wife, the dessert queen, prepare  a  wonderful  4 course meal for our parents. We set the table, and Jason and Sarah were dressed in their catering gear, and served our folks an awesome meal. Unless they are lying, I think it was a huge success and they even want to do it again. We gave up our house and had Chinese, so we were a bit jealous that they got such a fantastic meal from the Alm’s….but we are so glad it was such a great evening for everyone.

I highly recommend having Jason cook for any dinner event you have coming up! He is a dream! And Sarah puts any waitress to shame! Not to mention her delicious dessert!






Thanks again, Alms…and Merry Christmas, Steve, Sherry, Joan and Ken!

Feb 23, 2012: Make-a-wish

We have the best two wish granters Make-A-Wish has! Tonight was our first visit with Andy and Richard, two wonderful make-a-wish volunteers. Both men are dads, and passionate about helping kids see their wishes come true. We spent a few hours getting to know them, and them getting to know us. It was fun watching the kids warm up to them and even climb and sit by them. Jayden got m & ms and a cool tool box, while Brooklyn got a cool princess CD player and m & ms too. We discussed our wishes for the kids and they are super excited because they will get to be a part of the wishes beginning to end. The wishes kind of overlap, both kids will enjoy each other’s wishes. Jayden’s wish is a safe, outdoor space to run and play, and Brooklyn’s is a safe, indoor space. I am so excited for the kids and to have them have wishes they can enjoy for a lifetime, designed specifically for them! It should be all together in the fall in time for our grand open house!

Feb 14, 2012 Dr Burton visit

Happy Valentine’s day! We spent the morning down at children’s memorial for the kiddos 3 month check-up. It really has just become part of who we are now…and I have to say, the familiarity of the drive, parking, knowing our way around the building, the shock of it all has worn off. I think that has been a good thing. It’s just what we do. It was nice that school was canceled so Jayden didn’t miss a beat (or a party). As far as the check-up went, the kids are still doing well. Nothing major has changed. They continue to take genistein and we made a new ortho appt for both the kids. We also had blood and urine collected. Blood work is fine as is the urine, showing good GAG results this time for both kiddos. The new baby was discussed in terms of collecting blood to be sent off for lab confirmation on Sanfilippo. Other than that, they are taller, weigh more, and Brooklyn still struggles with getting her vitals checked! All in a days work!

4.06.2012

February: Aqua therapy

Jayden and Brooklyn started Aqua Therapy this month and it has been great! It allows them to be stretched and “worked out” in ways they can’t do on land. Because children with Sanfilippo get tighter joints as they age, it is really important to keep them flexible so they can be mobile as long as possible. Brooklyn still is a bit timid in the water but Jayden can’t wait to get in. It is a small pool and we go every Wednesday evening. Jayden swims 6:30-7:00 and Brooklyn 6:45-7:15. They each have a therapist. The videos are the best, but pictures will do!




House Showings/New basement

Our home gets an occasional showing…about 1 every price drop…we have now reduced it $55,000 and counting. Sadly, it has been on the market now for over 1 year and everyone who has seen it likes the interior but not the location. The complaints so far have been that we are on a well…septic, we have above ground power lines, we are near the airport, and we are Waukegan schools. They all say great décor and great price…but they don’t even bite with a low-ball offer. I am beginning to see it as God’s provision. Where else would we live at almost 8 months pregnant and an unfinished home?! At this point, it will be easier to sell now than 6 months ago. It is hard knowing we are loosing money, but we are beyond blessed to be moving into a home mortgage free this summer! It will all work out, and the more life I live, I remember how God has directed us this far, good thing he knows what is planned because I can worry less!

We do need to get into Beach Park schools by June for Jayden to start summer school…so move over Uncle Chad, here we come!

On a more exciting note, the basement cement has been poured! Way to go, guys! Thank you! It looks AMAZING!














Jan 16, 2012 Ultrasound, it’s a girl

Baby number three. Still sounds weird. I never thought I would be having a third child, and if you knew me pregnant with Jayden, you may be surprised that even Brooklyn is here. And beyond the walking symptom book I am when I am pregnant, it is even more amazing given the 25% chance this baby girl will have Sanfilippo. In a way, I have been avoiding this blog post. I guess it is because I actually am documenting my feelings towards a third child, and to be honest, I am full of mixed emotions.

It may not make sense to everyone, but Jut and I fully believe this little life, and the way it came about, is all God’s will. We spent two years praying that we would be open to whatever God wanted for our family. Getting pregnant was something that took a leap of faith, a lot of prayer, and time thinking about a third child with Sanfilippo. It is a total trust thing between us and God….not that this child wouldn’t have Sanfilippo, but that He would carry us and prepare a way for us to raise three kids. I always say the grass in not always greener on the other side, it is greener where you water it. I don’t think normal is the answer to happiness. I even think my kids are my normal, so a third doesn’t seem sad…it seems exactly right. Non-sanfilippo comes with so many challenges I have never experienced….and it would be a constant reminder of what jayden and Brooklyn can’t do. She could also talk back, be a brat, pee in the potty, and even not like me at times. I don’t think non-sanfilippo will be a “relief”, or better….or “thank GOD! She’s not like your other two…..” which I am sure ignorant people will say to us.

Every time someone implies that if she doesn’t have Sanfilippo it’s a better deal, it offends me. To me, that is saying Jayden and Brooklyn are somehow less than a normal child. Make sense? Don’t get me wrong….I know all the “benefits” of not having to bury all your children. It doesn’t a psych degree to figure out the joy of parenting a child without special needs. But in a large way-I guess I am trying to say it will be different, not better. And I am glad I think that way. I am glad that I choose to see the beauty instead of the pain. I feel like I would drown if that was all I was choosing to look at. I LOVE seeing Jayden laugh….at the same moment I type that, he has changed my computer resolution and I have pulled paper out of his mouth so my 5 year old doesn’t eat paper. This is the reality. But within it, there is both beauty and pain.

And in the same moment, Sanfilippo will be the first thing I think about when II see her. How will I react to seeing her for the first time? How will we grieve/celebrate regardless of the diagnosis? How will I do waiting a week after she is born to get the test results….as everyone, including me, guesses whether or not…..I don’t know. But I trust God will meet me in those days as well. I am reminded about God saying…33 Seek the Kingdom of God[a] above all else, and live righteously, and he will give you everything you need. 34 “So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today. (Matthew 6:33-34 New Living Translation (NLT))

As far as number 3, I have no worldly dreams for her. I don’t even take for granted the weeks ahead that she is still in the womb. Plenty of people close to me have lost a child before they took their first breath. And when I start to dream about what it would look like to teach her how to drive, hear her say “I love you”, buy big girl undies, have her go to a friends to play, read me a story, watch her get baptized, play a sport, go on a date, get engaged, or have a baby…..I stop. These things in and of themselves shouldn’t matter. Loving the Lord and living within His will is the only thing I dream for her. She doesn’t belong to my dreams anyway. I have no dreams, so I have nothing to grieve. It may sound sad to some, but I find it is so freeing. No expectations-no disappointment. There is only up from there and she can be whoever God made her to be. I just continue to pray when I start to think about losing her to Sanfilippo---or anything else for that matter, that God would just carry me and prepare me to remain in his arms.

Blind trust with no strings attached is faith. But this is a daily, moment by moment, alignment. It is not a “one and done” decision. Sure, I still get sad when I watch videos of Jayden at Brooklyn’s age, then think about all he has lost…and watch her…with all she is going to loose. But-it is in these moments, I can choose to focus on the pain of the loss….or acknowledge it sucks-then appreciate all the good within it. Brooklyn is thriving in the moment singing and coloring, and learning about the world, Jayden is still present and loves to wrestle and laugh. Just because the pain is real, doesn’t give it reason to consume me.

So, baby girl….remind me every day I get to be with you of its blessing…in my tummy or out. God is in charge of your days, and not me. Let me hold loosely so I can just love you.








January 2012: hang out

Some of the best memories are just the ones of us hanging around the house with no agenda...












And many times....hanging out involves our friends! We love doing life with you guys!