Hi Ya'll-
It's been awhile. I have been extremely busy. This past Thursday we had a cardiologist appointment at Children's Hospital. Wesley's heart is good, besides some thickening of his valves. The doctor even had a student with him and he had her listen to Wesley's heart and said, "This is what a normal heart sounds like, no murmurs or irregular beats"! How exciting is that?! And as an added bonus, Wesley loved him by the end of the appointment. After the cardiologist appointment we went to see the surgeon; Wesley gets his port placed on June 11th. Once they place his port, they will also be surgically correcting his umbilical hernia that he's had since he was born. The Dr. said the surgery will take around 45-60 minutes starting from the time he is completely sedated. After Wesley's surgery, he will be admitted into the hospital and the next day, in his hospital room, he will have his very first infusion of Elaprase, the Enzyme Replacement Therapy drug.
A day later, after our trip home from the hospital, we got back in the car and traveled to Texas for the MPS Family Gathering in Fort Worth. My friend Sarah and her sister graciously opened their home to Wesley, Ava, and I! I am forever thankful. It was a lovely trip. At the MPS gathering, I met other parents whose children have MPS. I just want to take a minute and talk about the MPS Community and how I got connected.
My friend Sarah texted me one day, asking me how I was doing. I shared the news of Wesley's diagnosis and she said one of her old coworkers son had the same disease (with the rarity of MPS, who would have guessed?). She then asked her coworker if she could give me her number so she & I could connect. This lovely woman added me to two MPS parents groups on facebook almost immediately. In this time of processing and uncertainty, these parents have welcomed me with open arms. I was given phone numbers, email addresses, and invitations to contact them any time I need to talk. Let me tell you about these women, and a few men; I wish I could hug all of them. They answer my questions, give me advice and share personal experiences they've had with their children. They have helped me crawl out of a few holes when I felt I'd sunk too low. They are especially helpful when I am at a loss when it comes to some of the side effects of this disease, like the aggressive behavior and horrible sleep patterns.
At the MPS Family Gathering, I actually had the pleasure of meeting three of the moms who had originally reached out to me. Two of those women have sons with MPS2 as well as the third mom, but her son is already a sweet angel in heaven. I already love these three women dearly. When I first got there I was greeted with warmth and the love of long time friends. It brought tears to my eyes. I am so accustomed to watching everything Wesley does because he doesn't understand or think along the same lines as everyone else; he tends to get into a lot of things, breaks them sometimes, and is constantly wandering off.
I was following Wesley around and a man came up to us, the husband of the woman whose son had already passed away. He gave Wesley a hug and a kiss and said Wesley reminded him of his son. She even told me later, Wesley's thick hair, his fingers, his mannerisms were much like their son. This Dad told me it was okay, there is nothing Wesley could do that all of the MPS parents haven't already seen before. I wanted to cry happy tears. My son was not a burden. THEY LOVED HIM. He was continuously greeted in this fashion, as were ALL of the other children.
What a rare occasion, being greeted by strangers this way. Wesley processes differently. He has Sensory Processing Disorder, as well as a two year delay. I have left many stores crying as my son had a melt down or was "not behaving" while other people gave me disgusted looks, or made nasty comments about me and my son. We do not go anywhere. He is what most people would call a difficult child, but that is a byproduct of his disease. It's not his fault, he does not mean to be this way.
I will be the first to admit that as his Momma, taking care of him 24/7, Wesley has helped me learn a tremendous amount of patience. He never stops moving, he can't sit still for very long. He doesn't understand danger or the "why" behind being told no to certain things. We rarely bring him to restaurants, birthday parties, or crowded events because it's hard on Wesley, for one. And two, it is extremely hard on me at times. Emotionally hard, more than anything, as I watch people fail to have compassion for a little boy who is truly challenged in many day to day situations we all consider normal. How thankful I am that Wesley is hard of hearing sometimes. Hopefully he doesn't hear all the things they say. I watch strangers glancing over, even rolling their eyes at me when Wesley starts screaming in the grocery store. I hear them sighing in restaurants when Wesley can't seem to sit still, lower his voice, or resist leaning over into their booths.Not to mention the wandering off. I can understand some of their annoyance, as some people we meet just do not have the patience for him. And that's okay, because whether they think so or not, Wesley is special.
Then there are those moments when strangers have completely blown my mind with their ability to connect with Wesley. The conference room at the Gathering was full of people like this. The children just knew they were loved and completely accepted. It was like Wesley was not only my own kid, but he was also everyone's. All the children were everyone's. It was the closest thing I have ever seen to what people refer to as "The Village" it takes to raise children. The kids weaved in and out of family groups choosing to sit with whomever they wanted. During family craft time Wesley chose to sit with another family with three little girls. He helped them do their craft and he was welcomed.
When we first arrived, one of the ladies I connected with on facebook had her five year old son (also with MPS2) come say hello to Wesley. They hugged and jabbered, he said "slide" to Wesley, in which Wesley replied, "yes" as he looked to me asking for permission to go. I said yes and as he walked away, he turned saying "bye Mom" and waved. My heart was saddened because he didn't grab my hand and demand I come with him. But my heart was overjoyed that he had made a friend and was confident enough in himself to go on without me. They played the entire time. How I wish we all lived closer.
For people with neurologically typical (or 'normal functioning') children, that may not seem like a big deal, but for us it was huge. Wesley still hasn't learned social skills for the most part, as he has a
severe speech delay which makes communication hard for anyone, let alone
children. He can only say a few words clearly and that in itself, makes him
the outsider at most play grounds and among other children in general (his hearing aids should be in soon!). My child gets left out, a lot. Watching that over and over and over again wears on my Momma heart. The first time Wesley was bullied he was two and a half years old. Could you imagine your child being bullied and called dumb because he or she couldn't talk? That is why my son being accepted in a setting like this event is such a big deal. That is why the fact my son met a child that loved playing with him is a big deal. I left there with my heart very full. We may have walked in as strangers but we left as family.
**** We still need your help!! Some of the homeopathic treatments that help with Wesley's sleep/mood are not covered by our insurance and I am trying to avoid putting him on medication for sleep. Many parents in the MPS community have recommended Young Living essential oils, sharing the improvements their children have had. We're still working towards the goal for the much needed fence and 'deaf child at play' signs for our well traveled dirt road. We also need help with traveling costs back and forth from the children's hospital. If you would like to help us out,
Click Here!
