Tell us about your family. If your child has multiple diagnosis, feel free to share them. My husband and I have been blessed with 5 amazing boys. Our first pregnancy was twins, and our identical twin boys were born 15 weeks premature. Our firstborn, Joshua David, only lived here on this earth with us for 10 short days. Our surviving twin, Caleb Mark, is now 8 years old. Since our twins were born, we have gone on to have three healthy, full term pregnancies. Jacob Michael is 6, Noah Benjamin is 4, and Malachi Joshua will be 2 next month.
Caleb was a completely healthy little boy at birth. Every issue he faces is a direct result of extreme prematurity. He had a grade IV interventricular hemorrhage when he was three days old. In “normal people language” here is what happened: Because it was far too soon for Caleb to be outside of the womb, his body experienced shock on many levels. One of the dynamics of that was a severe brain bleed. The bleeding in his brain blocked up the normal drainage system that our body is designed to do. Cerebrospinal fluid surrounds the brain and circulates throughout our system. Caleb’s cerebrospinal fluid began accumulating around his brain, and stayed there. Blood clots hindered this fluid from draining as it is supposed to do.
Tell us about the moment you were told your child had hydrocephalus. We were facing many, many things at the time that the hydrocephalus diagnosis was given. I don’t think it really sank in until much later. Honestly, it was one of the least of our worries – as we were just begging God for Caleb’s life at that time.
How has hydrocephalus affected your daily life? Maybe give one "real life" example. I guess I don’t think of hydrocephalus as affecting our life so much, as having a child with a shunt affects our life. Caleb’s shunt was placed when he was around 3 months of age. It, among many things, saved his life. Having a child with a shunt is such a double edged sword. J It is a miraculous tool that is a solution to a very dire problem. And yet, living with the daily “What if’s” of shunt failure has been a long road to travel.
Honestly, now that Caleb is 8, and quite healthy, I do not think of the hydrocephalus and shunt on a daily basis. – Probably not even on a weekly basis. It is a part of our life, and I no longer fear it.
Share a moment when you were frustrated or discouraged. I faced discouragement when we heard the words from a doctor, “It is not if the shunt will fail, it is when.” I hated to think that I would have to daily be worried about my child’s brain. I hated to think that my sweet little son would have to face a lifetime of brain surgeries. Fortunately, as I said in the previous question, that is not how this has played out for us. Every year we adjust more to our life with Caleb’s medical issues, and things seem to become easier and easier.
So far Caleb has had one shunt revision. He was four, and it was a scary time. We learned a lot form that experience. We know more of what to look for. We aren’t as fearful, as we learned that we do have some time form when the initial signs of shunt failure present, to getting him to a doctor.
Share a moment when you found joy or hope. How could I ever break it down to one moment? Caleb’s entire life has been joy and hope. Many, many times during his first year of life, we came very close to losing him. Our hope and Joy is in the one who created Caleb, and He has proved faithful over and over by answering our prayers and granting miracles that only He can perform!
One specific moment that I can remember as being very tearfully hopeful, and full of joy, was when Caleb took his first unassisted steps at age 4. He still most often uses a walker to aid in his walking, but he can walk across a room unassisted, if he is in the right mood. J Watching him do this for the first time was incredible! We had been told by so many doctors that this may never be a reality for Caleb, and it was with tears of joy that we saw that proved wrong.
What do you do to keep your sanity? How do you take a break? My husband Dave, is very involved in the care of our boys. He has a special bond with Caleb. Dave knows me very well, and quite often steps in to help me out when he senses that I am overwhelmed. My mother-in-law, Arlona, also has a special relationship with Caleb and helps out often. There are days that I am “done”, and definitely need a break! I am blessed to have some wonderful outlets, such as photography, writing, and volunteering at a local pregnancy resource center, which really helps me to be the best mommy that I can be!
What advice would you give to a family who has just received a new diagnosis of hydrocephalus? Number one: pray. This is not an easy road. You can not do this on your own. God is waiting there for you with open arms. He is the God of all comfort. None of this is a surprise to him. He loves you.
Secondly: It Will Get Better. It will. Some days you will not feel like that is true. Just believe it.
Also, you will learn more from this child than you ever thought possible. Open your heart to this.
And – you can do it! Really, you can.
How do you deal with difficult questions from onlookers? This is hard. It is hard to be gracious when your inner “mama bear” wants to growl everyone away. J I have tried to find a simple standard answer that I give out to people’s questions. For me it is usually, “Caleb was born too early, and was very sick when he was a baby. He has a hard time walking, but he is doing really great! We are so proud of him!”
Simple, answers question without going in to deep detail, and upholds his dignity.
What is one thing you wish families with typical situations realized about families dealing with special needs? Well, we are really all just the same. We all have difficult things that come into our lives and we do what we have to do. I am neither a saint, nor a slacker. Neither are they.
What is your dream getaway (either family, couple, or by yourself. . . or all three)? Well, I have been dreaming of going on a cruise with my husband for a few years now. Someday…
What is your child's favorite toy/therapy tool? Caleb is very tactile. Because his brain bleed was in the left side of his brain, the right side of his body is very weak, and doesn’t cooperate very well. We started doing occupational therapy when he was very young, to encourage feeling on the right side of his body. We would give him things to touch and different textures to feel to try to “wake up” his right hand. He now will not go anywhere if he is not holding his “chain”. He loves the feel of smooth beads or a little chain in his hand. We have several sets of beads and chains on hand, because if he loses one and we don’t have a back up, we are in trouble!
What is your favorite coffee (or coffee alternative) drink? Yes, coffee. J I like it. I need it. It is my friend. Right now I am loving Starbucks pumpkin spice latte, because who doesn’t love a wonderful fall drink when it starts to get chilly outside? I also really like caramel macchiato. And crème brule. Who am I kidding? I like it all. Bring on the coffee.
And just for you:
Your writing is beautiful and transparent. Through tremendous grief and joy, you have welcomed your readers along for the journey. Please share your reasons for being open and honest about your struggles and triumphs. There is a song by one of my favorite Christian singers, Natalie Grant, called “Perfect People”. The song states that, “There’s no such thing as perfect people. There’s no such thing as a perfect life. So come as you are, broken and scarred, lift up your heart, and be amazed; be changed by a perfect God.
I’m quoting those lyrics because they help me explain part of what I love about authentic blogging. I tend to think that “everyone else” has it all together. Everyone except me. By writing though our “real” life, I hope to convey that we are all in this together. NONE of us have it all together. That we all have struggles and joys. Yes, having a sort of, “open book” life can be invitation for criticism and other problems arising, but for the most part it has been a wonderful way to be real, to minister to others, to make some wonderful friends, and share our life.
Through my blog I have met many preemie moms, hydrocephalus moms, mom’s who have lost babies, and mom’s of special needs children. What a great way to encourage one another on this tough journey!
I also write to process. Many of my blog posts have been just me, alone in a room with my computer, typing like crazy, trying to process life. Often while I am typing, processing, the rest of the world disappears for a few minutes.
If any of my words can encourage and build up, even one other person, than I would consider my self very, very blessed!