Yesterday was World Down Syndrome Day --appropriate, as it was 3/21. I really thought hard about what that day could and should mean for us. I noticed some families treat it as a celebration, telling their friends "Happy WDSD" ---I don't think I am quite at the point where I can do that and truly mean it. I am always willing to celebrate my son and all of the support he has, but I just couldn't bring myself to wish people a "happy" day as if it was a holiday. For me, this year, I think it was a time of reflection and appreciation. The last 4 months have been the most incredible and most difficult of my life. I couldn't help but think of the all-encompassing support we have had from our friends and family.
So instead of participating in the "crazy socks" for awareness, or wishing people a "happy" day, we went about our day as observers, and spent a little time with our friends Amy and baby Ryan. For now, that is enough. Parker is the reason I get up in the morning, though, and his morning smiles are why I never miss sleeping in. I am here to be his mommy...and that IS cause for celebration. Maybe next year, I will be more ready to celebrate instead of observe!
Last weekend was so GREAT! Parker got to meet three of his cousins, his Great-Aunt Marijanna, Great-Uncle Ian, Great-Grandpa Manoni, Great-Grandma Manoni, and Great-Grandpa Glass. He got to see his Great-Uncle Ken and Great-Aunt Kim, and Grandma and Grandpa Preis too! It was so incredible to watch him with all of these people who love him so much. Without them, Matt and I would not be who we are today --so Parker will surely learn from them. We have to say that Parker was and continues to be a great traveler. He is such a mellow baby. Our biggest challenge on this particular seven hour journey was keeping him awake-- he would have slept the whole way! (and a nasty bout of constipation =smelly ride home). Words don't quite measure up when we try and describe how special some of these moments were for us, so here are some videos and pictures.
We have begun our major travel weekends for March! First stop...Cleveland! Parker is slowly getting to the age where car rides also require a little bit of entertainment, which is both stressful and so fun! I love getting time when he sleeps in the car to catch up with friends. I have to admit, though, that I love hearing Matt catch up with his friends just as much... especially the parts where he gushes about how well Parker is doing and how strong he is. It puts an instant grin on my face just hearing his pride. Even though traveling with a baby is hard, I love taking our little family to places where Parker can feel the love we all have for him. More pictures to come :)
The hard work for Parker is beginning! He has started two of the four therapies...physical and speech. We are holding off for a reevaluation with developmental and occupational. We have already learned so much this week! We are continuing tummy time, and also propping Parker up so he can have a little more support to grab at toys at his mid-line. We are having a little bit of a hard time with conflicting information that comes from different therapists, but are just doing out best to prioritize and determine what is most important. I am hoping that this summer I can read up a little bit more on things we can do with him.
From this point on, we will try to make Parker's eating and play time as purposeful as possible --within reason-- which is the part I have a hard time with. I feel so guilty when I can't be doing things with him every moment in the evenings. Bottle cleaning, pumping, bath time, laundry, etc...all of those have to get done too, unfortunately. I know we all go through that "mommy guilt." We are so proud of how well he is doing. He is a strong little guy!
This place has such a way of calming me. It does not erase or solve my problems or our challenges, it is not magical or anything crazy...but it is a place where I feel understood. The milestones are not happening when any of us wish they would happen, the Down Syndrome is not suddenly an easy diagnosis to live with, but the playhouse is a place where I feel like I can see proof of normal life resuming. The world did not end or stop, it has just changed for us. As hard as it is to watch other children and families go through this, and see my son's future abilities unravel before me, it is soothing to be around people who just get it. Today was especially nice...both Pam (developmental therapist) and Cathy (physical therapist) were on hand during play time to give us small tips and encourage us. Best of all, Parker's daycare teacher Hilary came with us. I am so grateful for that! She asked if she could come without any suggestions or comments from me, and took time out of the limited weekend time that she has to spend unpaid hours with my son. It just shows me how much she cares about Parker, and therefore, how much she is willing to do to learn to help him. We are lucky!
Tonight at one of Parker's therapy appointments, I was told again how well he is doing. Because I am his mommy, I can take pride in that (even though it is all him!) and act like a giddy little kid who got a gold star. We keep getting the comments like: "Oh, I would have never known he has DS" or "Wow! He doesn't look like he has DS" or "He has great mouth posture, and doesn't seem to act like a baby with DS." Initially, I take these comments as compliments (like people intend them to be), and say thank you. Is that the right thing to say and do? I'm not sure. It gives me unjustified hope that maybe Parker's Down Syndrome is more mild, or maybe he will have a higher chance at a "normal" life --even though no research or true evidence support that thought. To be totally truthful, though, I have to admit that there is the tiniest, smallest shred of me that psychotically and ridiculously and desperately hopes that some doctor will call me one day and say "Oops! We sent the blood test results to the wrong family, sorry!" --but irrational thoughts are a whole other topic. When people say these things to us, I am cruelly flattered. But I usually am plagued with a long list of questions afterwards. How will people act if/when he looks/acts like he has DS? Are they just saying these things to be nice? What will I do if someone is rude to him or our family? Will I be able to control my emotions in that situation?
So far, we have been lucky to be around such supportive family and friends. People who may not always say the right thing, but have good intentions. Our friends and family aren't afraid to ask questions or be around Parker......I will always be thankful for that. Ultimately, this whole situation proves that there is such a need for the GiGi's Playhouse campaign of changing how people view Down Syndrome...including me. I don't know that I will ever be thankful that Parker came into our lives with Down Syndrome...but I can't go one minute without thinking of him or thanking God for him. Everyone that meets him adores him. I know he his here for a purpose...and I guess that is all that really matters in the end.
I am sitting here today, snuggling with my boy, thankful for Casimir Pulaski day --time off --a much needed break. We had a wonderful, low-key weekend spending time with friends and family with a lot of laying around enjoying each other's company, reading stories, and playing with toys. Our weekend time has changed so much --and I love every second. Time is going scary-fast, though. I want summer to get here, but knowing that my baby's "baby time" is already 1/4 of the way gone is so sad to me! I think his first birthday in November might be a day of celebration and a day of sadness. Tonight and tomorrow, we are supposed to get a snow storm. On one hand, I'll always take a snow day to spend at home with my boys. On the other hand, I am SO excited for the gray, dreary, freezing Chicago winter to be over. Snow days only take warm days off away from us! Here's to low-key, super fun playtime with my little PJ.
Yesterday was World Down Syndrome Day --appropriate, as it was 3/21. I really thought hard about what that day could and should mean for us. I noticed some families treat it as a celebration, telling their friends "Happy WDSD" ---I don't think I am quite at the point where I can do that and truly mean it. I am always willing to celebrate my son and all of the support he has, but I just couldn't bring myself to wish people a "happy" day as if it was a holiday. For me, this year, I think it was a time of reflection and appreciation. The last 4 months have been the most incredible and most difficult of my life. I couldn't help but think of the all-encompassing support we have had from our friends and family. 
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