I remember every detail of the day we received Piper’s diagnosis. I remember what outfit I was wearing, the chair I was sitting in, I remember the expression on the doctors face as he delivered the news. I could see the disappointment that he had got it all wrong from the start, the gulp that he takes to say ‘I’m sorry’. I knew what was about to come out of his mouth. I remember the face of the nurse in the room and the tears in her eyes as she had to walk out. I remember looking at my husband while he leant over the big green recliner chair. We can see the pain through each others eyes. I remember staring at this piece of paper with the results and all these big words while the doctor knelt beside me reading it out loud, tears are dripping off my face smudging the paper. I remember that moment well, one that I will never forget. A moment that was to prepare us for this life we were about to lead as parents.

If I am honest, being a special needs mum is really lonely.  When you aren’t surrounded by other mums or parents that are on a similar journey to you it’s really hard. You can’t relate. They can’t understand the pain. The pain when you pin your child down while they are taking blood, having tests or scans. The unbearable pain to see the horrible things your child has to go through. The strength you gather to hold yourself together while you are holding them in your arms as they are being put to sleep; sitting by their hospital cot while they are sick; connecting the pump to feed them through their stomach; connecting them to oxygen while they sleep. The weight of worry you can often carry. The brave face you paint on while the Doctor delivers you news. You don’t know if you can take another hit.  Will my child ever talk? Will she ever eat? Will she have a mental illness? Will her list of symptoms keep growing? The fear you so often feel of the unknown. Although they may never get it I am thankful I am surrounded by some wonderful mothers who are always supporting and encouraging me on this journey, praying for and with me. I am forever grateful I crossed paths with them, that I can call them friends.

I have to work extra hard to save my marriage. Some statistics show that the divorce rate is 80% higher with parents who have special needs children. This is a scary thought for me. When I learnt that Piper is faced with this disability for the rest of her life I knew I needed to keep my marriage going. I refuse to be that statistic. I love my husband so much and I wouldn’t be as strong as I am without him. I am thankful God brought us together for this very purpose. We definitely have this high pressure life and extra stress but I am determined that no matter how tough it gets, I will never give up. I am lucky that my husband is so encouraging, he is my rock, he’s courageous, he’s hardworking, he’s thoughtful, he’s supportive, he’s so hands on with Piper and many other amazing things.

You have to learn to have a sense of humour and I learnt that pretty quick. For me, the 7 weeks we sat by Pipers bedside I had time to prepare. We played many games of celebrity heads, eye spy, eaves dropping, counting games and learning all things doctors and nurses do all while in between trying to do parent duties whenever we could. Early on, Piper’s hearing loss was moderate-severe, so she basically heard small mumbles. When we were home and people would come visit, they would talk really quiet or if they made a big sound and Piper was sleeping they would say, “sorry”. We would just laugh and say, “its ok, she’s deaf!” I’m not sure people found it that funny – but hey you need a sense of humour. You cannot dwell on the things that are out of your control. Now her hearing is moderate-mild and she hears A LOT more, she still requires her hearing aid to have almost full hearing.

You learn to not take offense. Along with a sense of humour and with all the comments, advice and stares we get from people daily you learn not to get offended. I often find it a great opportunity to get awareness out for 22q. There are a lot of small minded people in this world. People are usually just nosy, but I can educate them on something about Piper’s syndrome.

The little things are BIG things. Piper has come so far in 15 months. For the first several months Piper’s arms were so stiff we had to physically pull them down really hard to wash her. We worked tirelessly to strengthen her head so she could hold it herself. We never imagined her sitting, laughing, crawling and now pulling her self up on things. We celebrate these small victories that are often taken for granted.

I am tired. Parenting is damn hard work and it’s exhausting. But parenting a special needs child takes things to another level of fatigue. Even if I’ve gotten a good night’s sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs.

Prayer works. I pray every night for Piper, in many different areas for her life. Piper’s reflux was so severe to begin with. We were suctioning her anywhere from 20-40 times a day as she was unable to swallow it. It would come out of her nose and burn her airway. It was frightening seeing her in pain and choking, especially when sometimes we would wake up to it. I prayed and prayed every night, I wanted her healed. It wasn’t a quick fix but the last few months she has almost been healed. We are barely suctioning her and the reflux is so few and far between. I believe in miracles. God is so much bigger than us. He is a mighty, faithful, merciful God. I am learning to be patient in my praying. I believe she will be healed and will be eating completely by mouth one day. I’m thankful for my prayer warriors, that continually pray over Piper and believe with me for her healing. God is a wonderful God.

Take delight in the Lord, and he will give you your heart’s desires. Commit everything you do to the Lord. Trust him, and he will help you. He will make your innocence radiate like the dawn and the justice of your cause will shine like the noonday sun. Be still in the presence of the Lord, and wait patiently for him to act.
– Psalm 37: 4-7

I often carry a lot of weight on my shoulders. As I said before, I worry and I fear what lies ahead for Piper. I’d be lying if I ever said I didn’t, but when I am caught up in the midst of that, I bring my self back to centre, present in the moment. Present in God’s presence, with my fears and worries planted right at his feet. I get this overwhelming peace fill my spirit and know that we are here right now and its okay.

We do have it pretty tough with Piper but I know it could be worse, any trip to the children’s hospital can make me realise that. I am thankful for where we are at and I trust God for where we are going. Sometimes I get so caught up in our little bubble, between the hospital trips, therapy sessions and daily routines. I need to step back, look around and know that we are okay. We are blessed.

For everything there is a season,
a time for every activity under heaven.
A time to be born and a time to die.
A time to plant and a time to harvest.
A time to kill and a time to heal.
A time to tear down and a time to build up.
A time to cry and a time to laugh.
A time to grieve and a time to dance.
A time to scatter stones and a time to gather stones.
A time to embrace and a time to turn away.
A time to search and a time to quit searching.
A time to keep and a time to throw away.
A time to tear and a time to mend.
A time to be quiet and a time to speak.
A time to love and a time to hate.
A time for war and a time for peace.
– Ecclesiastes 3:1-8

I feel in some way God already prepared me for this journey. Motherhood is hard, but it is also very rewarding. We are all on a different journey, there is one no greater than the other. The joy Piper brings outweighs all this heart ache. It’s an indescribable feeling. I never imagined my journey of being a Mum quite like this but I would have it no other way.