Blake James McMillan was born at full-term the 21st March, 2012. He was the eagerly awaited first son to us, Jenny and Paul, and little brother to our gorgeous then two year old daughter, Faye. It quickly became apparent that all was not well with Blake, and to cut a long story short, he was rushed away at 24 hours old and taken to the Neonatal Intensive Care Unit where various tests were carried out. After what seemed a lifetime, but in reality, only 20 days, we received the utterly devastating news that Blake had a very severe condition that would affect every aspect of his life and would ultimately kill him. Naturally, we were in shock for a long time, torn, broken and struggled to keep going at times. The vast amount of appointments started and very quickly we realised our lives as we knew it were gone, replaced by a life no-one wants. A very hard journey commenced.
When you have a child, as many of you reading will, you have so many expectations, hopes and dreams for your child…things you will do with them, places you will take them, milestones, futures, experiences. You expect and hope for good health. You do not envisage a life of hospital appointments, admissions, seizures, pneumonias, equipment, feeding tubes, ventilators and you certainly do not expect to outlive your child. This is something we face on a daily basis. We watch our son struggle every day of his life. We wonder when illness will strike next….and we wonder how long we will have him.
Blake is now 3 and he cannot roll, walk, talk or sit. He requires 100% help with every aspect of his life and needs 24 hour care. He suffers from seizures which are increasing in severity and frequency. His immune system is affected and he regularly suffers from pneumonia which is the main cause of death in boys with this condition.
Blake is such an amazing, strong, beautiful person. He rarely complains, rarely cries, and is the sweetest thing I have ever seen. He is pure, innocent and untainted by this world. Nothing feels nicer than his gentle touch on my skin and my love for him is immeasurable.
We are so incredibly proud of Blake, not just for his strength and the wonderful little human he is, but of how he has affected other people’s lives. He has certainly given me, as his Mother, the strength to not only get through each day, but to pursue things I previously wouldn’t have dreamed of. He has helped people achieve things they didn’t think they could do and has brought out such warmth and kindness in many people.
Blake, we adore you as you are, but we want you to live a long and full life with no more suffering.