Thursday, June 30, 2011


Today I took Finley to her 2 year well baby appointment. A little late, but none the less, we got the appointment done! It was really nice spending some one on one time with her. I have to say, her personality is getting better and better. She is hilarious, and I think she knows it. Anyway, as we were waiting in that child friendly waiting room, I was filling out the questionnaire about your child's development. I was breezing through it, reading some of it to Finley (her latest favorite line is "what are you doing?") and it took me back to when I had to fill out the forms for Livia. At the time, I didn't know any better, but today I can remember sitting in the waiting room filling out the form for Liv questioning some of the questions. Asking myself, does she really do this? Well, kinda........ maybe? I think I've seen her do that once. I just thought it was normal to have to think about the questions. With Finley, there were no questions. So then the appointment. Our nurse practitioner, D, who also see's Liv, came in to greet us. Finley was so excited to see her and insisted we were there for a haircut, not a Dr. appointment. D asked Finley a series of questions, usually laughing after Finley's response because it was so on point and cute. She had Finley perform a couple tasks, like drawing some shapes and making a light go on certain spots that D cued. After this was all finished D told me how advanced Finley was for her age. She said that her speech was way ahead of where it should be. She told me that the tasks Finley were able to accomplish, most 2 year old's could not. She then said that Finley was extremely intelligent and I should be very proud of her. Finley then told D that we were going to go have Red Mango. It was a very good appointment and made me feel extremely blessed and fortunate. It also made me think about the balance in my life. Balance? A state in which opposing forces harmonize. Now, I, by no means view my girls as opposing forces. However, I couldn't help but reflect on these two very different Dr. appointments that I experienced this week. I felt like I was on both ends of the spectrum with them. Livia, who is developing well, but differently, and Finley who is ahead of the game. I couldn't help but think about balance. Imagine a scale. One side of that scale says MPS. The other side says typical. I thought about how my life would look if the scale only had MPS on one side or vice versa. If the scale tipped with only "typical", how would my life be right now? Would I be recognizing and celebrating every small development that Finley is making? I'm talking about the things that people might take for granted like using silverware, blowing bubbles, walking by my side in the store without running away, throwing away garbage, chasing butterflies in the backyard, or initiating our "beautiful" game. This is hard to say, but, I wonder how mindful I would have been with everything. Would I be living everyday with such purpose and drive? I wouldn't get to feel what raising an angel on earth feels like. To know that my 4 year old is changing lives in her own special way. What if the scale tipped with only MPS? Would I have as much hope and faith? I know I would still have the strong drive to make our foundation a success. Would I be afraid of the future? I wouldn't get to know what typical feels like. To know how blessed I am to have a miracle like Finley and watch her grow in a typical matter. I guess what I'm trying to say is that I feel like my life is balanced with having Livia AND Finley. I get to experience things that most people don't. MPS has balanced my scale by giving me patience, faith, compassion, and love. Typical has balanced my scale by bringing normalcy, perspective, hope, and love. I'm sure the scales in my life will be asymmetrical at times with both aspects having the ability to bring that balance back. Each of my children bring a lot to this journey of life. I feel like I'm in a unique place and God has intended for me to find this balance.

Romans 12:2 "Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect."

My prayer today will be the same as always, that God's will will be done. I pray that someday I hear as said in Matthew 25:23 'Well done, good and faithful servant! You have been faithful with a few things; I will put you in charge of many things. Come and share your master's happiness!'

Tuesday, June 28, 2011

A good report

Livia and I ventured into Chicago today for her every 3 month check-up with the geneticist. Liv was in a great mood, and I credit that to having some one on one with mommy, the sun shining, getting to watch what she wanted on the DVD player, and a little singing with what mommy wanted to listen to on the radio! Going to the geneticist for a "check-up" is like going to the pediatrician. They check her in, we wait in the child friendly waiting room, get called back, check height, weight, bp, pulse, respirations, all the norm. Questions are asked about how she is doing and if we are noticing any changes. I had nothing to report. I put a urine bag on her to catch a sample while we were there. (I guess this may be out of the norm, but it's norm for us). I casually talked with the genetic counselor about the latest MPS research. Dr. Burton came in and doted over Livia, like always. She always says how pretty Livia is and how lovely her hair is. It's so nice to hear. Having a Dr. that keeps it light and real is so refreshing and encouraging. We've encountered physicians, not many, but some, that treat my child like she is a number or just a patient on a piece of paper. This is not so nice. The appointment was short and sweet, and then we made our way down to the lab. Livia has to have her blood drawn at each visit to monitor how the Genistein is treating her system, monitor her overall health, and we send a sample to the UK for a study. Livia has never cried with one of these blood draws. I'm sure the numbing spray helps, but she's a trooper and is so brave. Being at Children's Memorial is not a place that I envisioned spending a lot of time. However, we do. There are a lot of people there at all times. Families that are dealing with some tough things regarding their children. I see all types. I see children that are non-functioning, have tubes coming out of every orifice of their bodies, children with no hair, and some that are just beginning their path of diagnosis. As parents, there is an unspoken, glance of the eyes in passing, of compassion. At least I feel this. Being amongst others who are going through something is somewhat comforting. A feeling of, I'm not alone. There is someone else out there who understands what I'm going through. Not that others don't show compassion to what we are going through, because we certainly have A LOT of friends and family that lend that support. It's another family who wants to take the time to get to know my child and not care that her Barbie's feet are chewed off. Siblings of affected children who have learned so much compassion in their own short lives that I admire and respect. Today, getting a good report regarding my child made our visit positive. Looking in the eyes of other parents going through tough times made me re-visit our blessings. I'll be saying an extra prayer tonight for those families going through some really tough times.

Wednesday, June 8, 2011

First annual Liv Life Golf Outing

This post is a little over due. The first annual Liv Life golf outing was June 20th. It was more than a success! My dad, Jim Fish, and step-mom, Carol Zuhone-Fish, were the organizers/prize-getters/phone call makers/event coordinators of this fund raising event. With all the hole sponsors, silent auctions, raffle tickets, and donations the Foundation grossed $12,000 and netted $9,000. This was so much more than we expected. Our goal was to get 18 teams and ended up with 16. The weather was so perfect for the day. The event was held at the U of I Golf Course in Savoy, Il. The day provided 18 holes of golf, lunch, 3 drink tickets, snacks, gift bags, dinner, and a t-shirt. There was a chance to win a car with a hole in one. Unfortunately, no one won. We had A LOT of items donated for prizes, gifts, and the snacks were donated. We had an awesome banner donated to the foundation. I think the event was really well organized and generous! Thank you to dad and Carol for all the hard work, phone calls, meetings for prizes, etc. This was such a generous thing that you planned for the foundation. We look forward to having the event annually! Thank you to the Black girls for watching my girls that day. I wouldn't have had the opportunities to speak with people and sell tickets without your help! You ladies rock! Thank you to all our friends and family who gave their Friday to volunteer at the outing. Thank you to all the hole sponsor's, donor's, and businesses who gave money, time, or prizes. This was another great example of people's generosity and kindness. Keep an eye out for upcoming events and fundraisers! THANK YOU!!! To view the photos from the outing, please visit HERE You will have to create a sign in and password.

Friday, June 3, 2011

Worse off than me?

All I've wanted to do this week is sleep. I've been very tired, and I've been successful with actually falling asleep. I've been able to sleep during the day when the girls rest, which is very unusual for me. Sleeping at night has not been a problem at all, and I'm ready to sleep at 8pm after a nap in the afternoon......which again is unusual since diagnosis. I'm thinking that this may be one of the many coping mechanisms that I have and will experience since Livia's diagnosis of a terminal disorder. Some of the other coping mechanisms that I can recognize are; running/exercising, not eating, art, eating in an unhealthy manner, sleep, no sleep, avoidance, and creating our foundation. Not all of these are bad, but some certainly are. We all have bad habits, right? I think I may be experiencing another stage of the "stages of grief." There are different models out there of what the stages of grief look like. One of the most common list's the stages of grief as 1. denial 2. anger 3. bargaining 4. depression 5. acceptance. When you experience grief, apparently you follow this list as your emotions of dealing with a loss/tragedy/significant life event/illness/etc come about. The ebb and flow of my emotions have caused me to experience some of this list at different times and not in order. I feel like my sleep induced stage this week has been a coping mechanism to anger. I'm not angry with my children, I'm angry about what we are going to have to face. Not that I'm thinking about Livia dying, even though that is the forefront of my thoughts, but angry about the decisions that we may have to one day make. I'm angry at the circumstances, financially, that this has and will continue to burden my family with. I'm angry that we, educated and well employed people, aren't able to find any kind of assistance out there for this financial burden that we are facing. Can someone just please but me a stink'n pack of diapers? PAUSE and BREATH.....sorry about that. I'm not looking for someone like you who is reading this to send me a pack of diapers. That's not what I'm getting at. I'm just angry that a family like mine who are good contributing members of this society can't receive any assistance just because my husband makes a good salary. We are struggling to. I'm angry that I still have to change diapers. I'm angry that my child crys at times and I don't know why. I'm angry that I'm going to have to tell her sister one day why she doesn't talk like her. I'm angry that I feel so alone. I could go on, but now I'm angry because I'm crying. UUUUGGGGHHHH.....I kinda got off on a rant, but I feel like this blog is another coping mechanism.
Side does NOT make me feel better when someone tells me or mentions to me that someone out there has it worse off than me. REALLY???? I really do love facebook, but sometimes facebook can be my worse nightmare. Yes, there are people out there that have terrible situations. They may never see their child walk, hear their voice, only have their child for a year or maybe only a couple hours, someone may have more than one child with a terminal disease, someone may not be able to have children, maybe they themselves are facing something really scary. Does it matter? This doesn't make me feel makes me even more sad. I want to reach out to them, know them, try to help them in some way. I really don't like to hear that someone has it worse off than me. Maybe it's true, but who can measure that, and who can say who's situation is worse? I'm sure not going to walk up to someone and say "HI, my name is Kelly, I hear your situation is worse than mine, can we be friends? Someone thought by you having a terrible thing going on in your life would make me feel better about the terrible thing in my life." Now, with that being said, I do appreciate and find comfort meeting people that have experienced or are experiencing grief. I know, it sounds very strange, but I do. I'm comforted knowing that I'm not the only mom, wife, sister, friend, whatever, going through those stages of grief. It's hard enough being here alone (without family), as well as feeling alone in this world trying to manage everyday with a child facing a scary future. With all of this being said, I really don't like this stage of anger. I'm not an angry person, and I really don't like sleeping when the sun is out, and both of my girls hair sparkle in the sun. I'm thinking it's time to move on from this week, pick myself up, and know that everything is in HIS hands. I shouldn't complain to much. I have a husband that has a great job and who loves me to death, and two beautiful happy girls that are waiting to splash in our new pool. Bring on summer and bring on a new mood! Thanks for listening!