Skip to main content

Dear Mama

I recently read a blog post where a woman wrote a letter addressed to herself before her daughter was diagnosed with CP. I learned a lot from that letter and you can read it here. One of the things that really stuck out to me was when she said "Her progress doesn’t solely rely on you; she will go at her own pace. Follow her lead and be strong for her". I cannot tell you how many times a day I see Bren's lack of progress as a failure on my part. Because here's the thing; I am with him almost 24/7. I am taking him to this therapy and that therapy, this doctor's appointment and that one. It's easy for others to tell me that it's not my fault and Bren will do what he can when he can and it's so true. He will and just because he doesn't do something we have been working all day on, does not mean that I failed.

I love letters. I love getting things that are thought out and filled with so much love. Words of affirmation are my thing. I love to give them and receive them. So, I decided to write myself a letter. A letter to myself before Bren's birth. A letter I wish I would have had. A letter that I hope helps someone else.

Dear Mama,

You have no idea what is about to hit you. You are about to walk the hardest road of your life. You are about to enter into a world that you have only been slightly exposed to. You've been exposed as a social worker, teacher, and friend. But you're about to be exposed as a parent.

You are about to enter into the world of special needs parenting. A world where you will cry yourself to sleep more times than you can count. A world where you are angry, frustrated, sad, annoyed, confused, overjoyed, content, excited, and okay all at the same time. A world where you face more emotions than you knew were out there. A world where you will become so use to waiting in waiting rooms and even your car. A world where doctors, therapists, specialists, and clinic staff become your friends because you spend so much time with them. A world where appointments become all you know. You are about to enter a world full of joy; more joy than you can imagine. You are about to enter into a world where you celebrate every milestone more than you celebrate a Packer victory. A world where you tell all of your friends the miracle of the day.

You will find a miracle everyday. Some days you will have to search harder than others. Some days there will be so many miracles that you are constantly texting your friends about. Just remember that he will make progress when he is ready and on the days he doesn't make progress(yes, those days will happen far more than you want them to), it is not a failure on your part. It's easier to say that than to believe it, but do yourself a favor and start believing it now.

You will have hard days. Oh so many hard days. Doctors will make you angry. Therapist will tell you everything you are not doing and nothing about what you are doing well. You will spend more time in the car and at the Children's Hospital than you do at home. You will be tired and exhausted, not from a lack of sleep, but from having to think and care about so many things at one time. You will learn to become extroverted and that will take a toll on you. On these days, lean on those friends that have surrounded you(Spoiler alert: you're about to find some really good ones). Tell them how you are doing. Tell them how they can help. Cry with them. Even let them hug you, it feels good, I promise.

You will have wonderful days. Bren will do miracle after miracle. Bren will have accomplished some new task. A specialist will tell you "hey, you are doing a great job". A friend will volunteer to watch Bren so you can have a much needed break. There will be days where life feels "normal". Embrace those days. Hold tight to those days. Lean on those friends during those days too. They mean it when they say they want to walk this journey with you. Let them.

At the end of the day, you are one amazing mama. You gave up your plans and dreams for this beautiful boy. You are doing everything right, keep at it. Praise God for the mountains He is moving and the path He is paving for Bren. Praise God for those friends that surround you for the journey. You are okay. You are more than okay. You have a beautiful family that serves an amazing God and you cannot ask for much more than that.



Comments

Popular posts from this blog

NICU

The NICU. This is one post I wish I didn't have to write. And I suppose I do not really have to, but it is such an important piece to this story, that it felt wrong to leave it out. We spent 19 days in the NICU. 19 days. Those were the longest 19 days of my life. We arrived there just hours after Bren was born. He was started on a cooling treatment. This treatment cooled Bren's body down but the true intent was to stop any secondary brain damage from happening. Cooling treatment lasts for 72 hours. Bren was scheduled to end this treatment and start warming on Saturday morning. Bren had a rough time warming up and did not actually complete the treatment until Sunday afternoon. 4.5 days. That's how long the treatment took. That's how long it took for me to be able to hold my baby boy. You see, I wasn't allowed to hold him when he was cooling because holding him would allow his body to warm up too much. That was hard. Really hard. I couldn't hold and comfort my b

A Letter To My Kiddo With Disabilities

Hey Kiddo,  When your dad and I first found out you were going to be part of our family; I couldn’t stop myself from dreaming and having goals for you. I was excited to watch you play soccer and be in the band. I was excited for you to love reading just as much as me. I even thought about what your long term future would hold and if you would get married and have your own kids.  The day of your birth was one of the happiest but also the scariest day of my life. We almost lost you. But thanks to an awesome, loving, gracious God and your amazing doctor, you were able to stay here on Earth with us. You survived our nightmare. You were not given very good outcomes in the NICU but that has never stopped you from progressing and flying past the expectations they put on you.  My dreams for you changed, that day in the NICU when they told us you have HIE and likely will develop CP and a list of other diagnoses and to never expect you to lead a “normal” life. Instead of dreaming of you

How Can I Help?

The number one question I get asked (Okay, maybe it's the number two question) is, "how can I help?" For a variety of reasons, that is the hardest question for me to answer on the spot. One of those reasons, is because I hate asking for help and accepting help. Another reason is because I am generally so overwhelmed with other thoughts and schedules and all other life things roaming around in my head that I don't have the capacity to think about how you can help on the spot. So here is a list of things that I have thought of that could be helpful. And really many of these things can be helpful for any mom with young kiddos. 1. Meals. If you have time in you schedule and room in your budget to bring a meal of two that would be incredibly helpful. After a busy day of appointments cooking is the last thing on my mind. I am generally too exhausted to cook let alone think of the food we have in the house. 2. Prayer. Please don't pray that our child will get better.