At her eye appt last week, a lady approached me asking me how old Mattie was. When I told her that she just turned one, she was shocked and said “she is so little”. I for some reason felt the need to defend Mattie and said “she was born 9 weeks early” and turned around. This week at pedi office we go in to have Mattie weighed. As we lay her down on the scale, the nurse says “you can sit her up”. Aghhhhhhh!!! My response “she does not sit up yet”. The nurse was surprised. It was awkward for everyone.
This is going to be an interesting year to say the least. Most of Mattie’s delays, in the past, would go unnoticed since she was a “baby” but now that she is a toddler and not doing the “normal” things a toddler can do, the questions are starting, the stares are here, and my niceness is starting to waiver. We are shifting from Mattie the baby to Mattie the disabled toddler.
I can’t tell you the amount of times that people have told us that Mattie will be just fine. They say it with such ease, so matter-a-fact, that they believe it. As much as I want to believe that Mattie will be just fine, her difficulties are real. They are not going away. It is not as easy as just saying she is ok, because she is not and that is the reality of our situation.
We can’t take Mattie to the grocery store unless we push her in a stroller since she cant sit up in a cart. Well, pushing a stroller and a cart is not really possible with 2 hands! We have to bring our own high chair to restaurants since she cant sit up in a normal high chair. We have a stroller that works for now, but may need a stroller/wheelchair in the near future if she starts to outgrow this one. Her bath is ridiculous! We still bathe her in an infant bath tub. I have yet to find a good non-disabled bath seat that will support her and make her feel secure. It goes on and on and on.
It is taking some time to process this. Every time I see an adult with CP I can’t help but take notice. I know… it is exactly what I am complaining about. It is just that I can’t help thinking, is that how Mattie will walk or is that how she will get around? I want to give these people a hug and ask them about their life experiences. Are they happy? Because in the end all I want is for Mattie to be happy.
The question of the hour: at what point will Mattie reach her full potential? Do we try the remainder of her life to keep pushing her or at some point are we going to have to accept that she will have limitations? I have said in the past that I will not stop until Mattie can run a marathon with her dad… I hope and pray that this will be a reality.
You and Spinner are great people and better parents! I don’t know what to say or what is the correct things to say. But, don’t let the people get you down, she is beautiful little girl. All I know to say is “KEEP YOUR HEAD UP”
No person reaches their true great potential without some pushing (perhaps nagging as well!), BUT, for right now it’s you guys for Mattie- keep at it!! Some day, she will find another “push” and you will be able to ease up and smile knowing that you got her that far…but for now, don’t stop, stay strong and keep pushing her to greatness!
Mattie’s was a miracle herself!!!! In my eyes this means she will continue to make you a believer in miracles for the rest of your life. She has the potential to do anything she puts her mind to and with you and Jimmy as parents she has the best cheering squad anyone could ask for. Reading your posts really make me think of how lucky a girl she is and how much she is loved. I can’t imagine your journey will be easy but it will be full of wonderful suprises and I hope you cherish all of them!!!!
Thanks Andrea! It is amazing just how much we cherish everything. We have come to appreciate the little things with her that we so often overlooked with Joba. She has made me a believer of miracles or as Jim would say a Bill-iever 😉
Please don’t get discouraged, you are doing a wonderful job!
Hi Jess. Mattie’s story is just beginning and she couldn’t have asked for better parents. I’ve read your blog and it is truly inspiring. I work with children who have many different disabilities. One comes to mind right now, a young boy with CP, Michael. He is very smart, although he struggles with walking at the age of 12, when he enters the room it lights up. He has a smile on his face everyday. This year he was the leading news anchor on the school announcements. He has taught many other students life lessons, that I as a teacher couldn’t. I hope this story brings more “Hope for Mattie”. Keep up the hard work!
Hi Jess. I am a mother with a 13 year old girl (Emily) who has been diagnosed with CP and Developmental Delay.
I have been where you are now. The searching, the questioning, the anger, despair, the joy, and the love. Let me tell you it gets better and sometimes it is the pits. I have learned to try and live in the present and prepare for the future but not question it. Work on what is important to you and Mattie now.
I know you probably have read or heard that the most important time is from birth to age 7. And that you are wanting to do everything that you can for her in that time. But rest assure that they do not stop learning on their 7th birthday. You will have all the time in the world.
Here are a few motivational phrases that I have learned that was useful:
Don’t confuse acceptance with defeat. You can be accepting and still desire change. And change happens *easily* when you’re at peace with What Is.
You can believe in the diagnosis, but do not have to believe in the prognosis.
Also what I have figured out is that when Emily was younger we really pushed her in the motor functioning areas. I think we did this to make her like everyone else, but now as she is older I realize that the most important skill for her is “communication”. It doesnt mean just talking but being able to communicate in anyway that she can express her thoughts and feelings.
Big hugs. And Mattie is so adorably cute. Reminds me of Emily when she was younger with little tiny AFO’s and when she got her first wheelchair. Just so tiny in such a big chair.
Thanks Laura! We were told right from the beginning from our Neonatologist that Mattie’s diagnosis is not a prognosis. I think we have been holding on to that since we found out she had PVL.
We have started signing with her in hopes that she will be able to communicate with us and not get frustrated.
There is so much to learn and new things to try. I am thankful for moms out there like you who are helping us through this crazy amazing journey!