Author Archives: hopeformattie
Anabella
A few weeks ago Jess and I went to a conference in Orlando for families dealing with disabilities. There were many different hour long courses covering a wide range of topics, from tax planning to how to emotionally cope with having a disabled child. For most of the day Jess and I went to separate meetings, trying to get to all of the classes we thought would be useful. It was the first time we had gone to anything like this and I have to admit, at times it was awkward. I didn’t grow up around people with disabilities and I have not had a lot of opportunities to meet and interact with people with disabilities in my life.
The last session of the day, we decided to go to a roundtable for cerebral palsy (CP). We didn’t know what to expect, but it sounded like a good opportunity to learn from other people dealing with the same disability that we were. By the time the session started there were about 50 people in the room. Most were parents of kids with CP and some even had their kids there. What first struck me was the vast array of handicapped equipment being used, mostly to help the person get around on their own. This is something Jess and I have talked about; what kind of assistance Mattie is going to need as she grows and we become unable to simply carry her everywhere.
This class was a bit different than the others. Instead of a person teaching a topic, this class was more of a “meet and greet” with other people living and dealing with CP. The organizer of the class had us form a big circle with the chairs in the room and prompted everyone to talk amongst ourselves. A couple quickly stood up and announced that they were passing around a notepad and for those who were interested to add their name and email address to the list. In the next couple of days they would be sending out a mass email with everyone’s information in case you met someone you wanted to keep in contact with. Jess and I added ourselves to the list as it made its way around the room.
The group quickly broke into several conversations with Jess talking to a couple of women next to her while I introduced myself to a young couple sitting next to me. About half an hour into the session, I looked across the circle and noticed a middle aged woman in a wheelchair sitting by herself. One of the difficulties of being the parent of a child with CP is mentally dealing with an unknown future. Will Mattie be able to walk? Will Mattie be mentally handicapped? Will Mattie ever have a job? Live on her own? Fall in love? Get married? Not having been around people with disabilities, I had no idea if someone with CP can have an expectation of any normalcy. This seemed like a great opportunity to see what kind of life someone with CP lives. I got up, walked across the room and sat down next to her. She politely smiled as I introduced myself and asked if she would tell me her story.
Her name was Anabella and she was born in a rural part of Colombia. There were difficulties during her birth and when she started missing some developmental milestones, her mother traveled to Bogota´ to consult a doctor. She was diagnosed with CP when she was one. At five years old, she took her first steps. She first learned to walk with a walker, then a cane, eventually becoming able to walk on her own for short distances. She had graduated college with a degree in industrial engineering. At 25 she moved out on her own, becoming completely independent. She is married. In her early thirties she had an accident while grocery shopping. She fell and broke her leg in 2 places. It took her over 2 years to teach herself how to walk again, however, the pain from doing so led her to living in her wheelchair. Anabella spoke about her life with a big smile on her face. She said that people often asked her how she was able to cope and keep such a positive attitude about life; she admitted the question confused her. To her, she was lucky to have the capabilities she had and to be living such a fulfilling life.
Since the conference I have thought a lot about Anabella. She gave me a picture of what a successful life could be for Mattie – what I could hope for. A few days after the conference I brought her up in a conversation with Jess, saying that she would have been such a great role model for Mattie. Jess and I laughed as I suggested that Anabella didn’t really exist and wasn’t really in the room that day – that I had imagined her because I needed to. Jess lightheartedly assured me that she had seen her there too.
A few days later we received the mass email from the couple detailing everyone’s name and email. At the end was a note asking if anyone had Anabella’s contact information. Apparently she had added her information to the list, but her email address was incorrect. They had tried every reasonable variation of her address but were unable to contact her. Sometimes people come into our lives at opportune moments and give us exactly what we need, only to disappear as quickly as they arrived.
Wordless Wednesday
Sister
Several weeks ago, Jim and I were discussing when we should start incorporating Joba into some of the things we do with Mattie. Joba knows Mattie goes to a lot of doctors appointments and does “exercises”. He has even seen several OT and PT sessions. Every time we go to Gainesville for ABM we leave him home with family, so he knows we go “far away to do Mattie’s exercises”. He never seems to care… until he starts acting out in a way that makes me think he might be a little jealous of the attention Mattie gets.
Joba does not realize that there is anything wrong with Mattie. She is his sister and he “helps her learn to do the things she can’t do”. If we are doing exercises he will lie down next to her and say “look Mattie, this is how you do it”. It is very cute to watch. Lately Joba has been interacting with her a lot more and she is constantly watching him. He, like any boy and brother, will have his moments of being rough but most of the time he is very sweet to her. I love to see them interacting together. It makes my heart smile.
We are not prepared yet for how we will explain to him that Mattie has cerebral palsy, I think he will start to understand it in the coming year as he sees babies/kids younger than Mattie doing things that she can not do. We have bought several books about having a sibling with a disability to read to him when we think he is ready. We also decided to take him to Gainesville the next time we go so he can see what we really do up there. I want to be able to include him in “Mattie’s World” since it takes up so much of our free time. I hate that we break up our family to make these weekend trips. It will probably be a disaster with 2 kids and us in a small hotel room, but I want to start including him in what has become a big part of all our lives.
So here is a little bit about Joba Roo – The Rooiest Roo of all the Roo’s
The other night after I put Mattie to sleep, I told Joba that we had a special task to do and he had to sit like a big boy at my desk and answer some questions about him and Mattie. He was excited about it and after we were done, he wanted to do it again 🙂
20 Questions with Joba
What is your name? J-O-B-A (he spells it out)
How old are you? 3
What is your favorite color? Pink (we keep thinking he will grow out of this…)
What is your favorite toy? Buzz and Woody
What is your favorite food? Carrots
What is your favorite TV Show / Movie? Buzz and Woody (AKA Toy Story)
What is your favorite animal? Moose’s (????) and Ladybugs
What is your favorite song? ABC’s
What is your favorite book? Pinocchio
Who is your best friend? Giovanni and Sebastian
What is your favorite thing to do outside? Play Baseball
What is the hardest thing you learned to do? Clean Up
Who do you pray for at night? Giovanni and Sebastian (usually this is Uncle Bill)
What is one special thing about you? I don’t know, let try another one
Who is your Sister? Mattie
Do you love her? (nods his head)
How do you help Mattie learn? I help her play
What do you like the best about Mattie? (no answer)
Do you want another brother or sister? Yes, a sister!
What is your favorite thing to do with Mattie? Lay down with her and play
For the actual audio of this “interview” and Joba singing the ABC’s CLICK HERE.
To see a FANTASTIC slideshow movie of Joba and Mattie CLICK HERE.
Wordless Wednesday
Wordless Wednesday
Acceptance
In another post I wrote I talked about the moment of acceptance. “We had a choice and we had time to accept our choice, no matter the outcome.” I accepted that things were not okay with Mattie a long time ago, but every now and then… it hits me… again. I am beginning to think that the sadness of what could have been will never really go away. It just gets buried deep down inside and at any given unexplained moment it just pops up and says “Hi, I am still here”.
It happened at the OBGYN office yesterday.
As I walked into the office, the doctors have a wall full of birth announcements and cards. I scan it quickly and notice that the thank you card we sent a year ago was still posted on the board. It seems so long ago that I sent that card. So much has happened since then. I was taken to the same exam room where I was tested for leaking amniotic fluid at 17 weeks pregnant. This room just happens to be next to the office we went into when I was 20 weeks pregnant and were told I had to go to the hospital for additional testing since I had no fluid. My eyes started to fill up with tears. I had to tell myself to get a grip. I was surprised by how emotional it was to be back. Deep breaths… Deep breaths. I am not kept waiting very long when my favorite Dr walks in. It was good to see her.
I was looking for answers to a question that I knew had no answers. I was looking for some direction. The biggest unanswered question in my life, why did my water break at 17 weeks pregnant? Of course I asked this question more than several times during my 59 day stay in the hospital, but now that I had more time to focus and reflect, I needed an answer and a better answer then “we don’t know why”. Of course, I did not get it. They don’t know why. I knew that before she even said it, but I had to ask again.
I had never told my doctors about Mattie. I decided that I was going to tell Dr. R today. As she is asking me how things are, I get tears in my eyes and I break down crying as I tell her Mattie’s story. It has been a LONG time since I cried about this. But just seeing her and being there brought back some really sad memories and I could not hold it in.
Sadness, Pity, Anger: “Hi, I am still here”
Me: “Yes. Yes you are”
As Dr. R was leaving she gave me a hug. I wish I had given her a Hope for Mattie card to let her know that I am not always a disaster, that I usually have things under control and am very positive about Mattie’s future. I think I am going to mail her one 🙂
I have decided that acceptance doesn’t have to mean that I am okay with the way things are, because I am not really okay. Acceptance means that I can’t change the past and I am learning to live with it.
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If you have not already checked out our new Hope for Mattie Necklaces, please do. All the money raised from the sale of her jewelry goes directly towards Mattie’s therapy and medical expenses.
Wordless Wednesday
Someday Sunday’s
First Steps
Since going to Gainesville a few weekends ago, Mattie has been making steady progress. She rolls everywhere these days and still is trying to sit up the hard way! She is much more relaxed and has been better playing with her cognitive toys. I have been trying to teach her what a nose is. I will point to my nose, her nose, & pooh’s nose, repeating the word nose. Occasionally she will reach out and grab my nose when I ask her but most of the time she brings her hands to her mouth and starts to make a noise and moves her hand back and forth. It is sooo funny. As I am talking to Sarah about this, Sarah mentions that when she signs “eat” to Mattie, she does the same thing! And apparently while she is lying in bed trying to nap!! Oh well, one day she will realize that she has a nose and will be able to sign “eat”, but until then we will keep ourselves amused with her playful antics. 🙂
So last week I could not make it to her OT appointment. Jim calls me and wants to know if I got his text of Mattie walking. I am in shock. WHAT?!?!?! So I watch the video and I am in tears. First of all, we don’t normally “walk” Mattie. The few times our PT tried, Mattie would scream and cry. She does not know to move her feet forward or to bend her knees. In order for her to “walk” we would have to pick up her legs, which are stiff as a board, and move them forward. It has been a long time since we “walked” her. During this OT session, Mattie started to bend her knees and pick up her foot and place it down again. So they decided to try and see what she would do. While holding under her arms, she bends her knees, picks up her foot and actually moves forwards. She is walking!! It was really incredible to see. I have never given up hope that she would walk one day, and this just proves to me that she will be able to do it!! Check it out yourself: Video of Mattie Walking
Some other updates 🙂
We had a pedi appt last Thursday and Mattie gained 15 ounces in 6 weeks. We both thought that was pretty good!! This puts her in the 5%. She is back on the charts!
Mattie has been doing better with eating food. Last month we had her speech therapist come out to the house and give us some pointers. I thought Mattie chokes on table food, but I was corrected in that she gags. Either way, it makes me panic! If we can place the food on the side of her mouth and not straight in, she does better. We have found out that she loves chicken. Like addicted to it!! 99% of her food is now homemade. It is such a pain, but hopefully our efforts are paying off with some weight gain.
We were able to get in 10 total ABM sessions last month and another 8 are on the books for June. I think Jim really started to believe in this therapy after seeing the progress she has made the past few weeks. He even questioned whether we should move to California for a few years, where the main ABM center is. Now that put me in a panic. I think we are doing well with the system we have in place. We are getting in what I believe to be the recommend sessions every month. As long as we keep our commitment to taking her the 8-10 times a month, there is no reason to move. Plus, if I was to ever leave my family it would be to move to NYC not Cali 😉
So… speaking of NYC…
Jim and I decided to take Mattie to see Marcy, a top ABM trainer and practitioner, in NYC this summer. She comes highly recommended from other moms and from our Gainesville practitioner, Josie. We talked to Josie about it and Jim’s main question to her was, what is the difference between spending all of this money to see her rather then just coming to you? I loved Josie’s response. Sometimes having another ABM practitioner work with Mattie could give alternative insights to some of the issues Mattie is having and how to resolve them. Since we can’t afford a trip to CA for the main ABM center right now, this is the next best thing. We already planned a trip to upstate NY this summer to see Jim’s family. So this seemed like the perfect opportunity to go into the city to see Marcy. We are going to be able to do 5 sessions thanks to all the donations we have received so far!! I am really excited about this trip!













