Marriage can be tough. And parenting is no easy feat. When a rare disease like Short Bowel Syndrome (SBS) is added to the mix, it surely doesn’t make either of those responsibilities easier.
What is Short Bowel Syndrome?
Short Bowel Syndrome is a chronic malabsorption disorder typically caused by the surgical removal of the intestines (or a portion thereof). For a lot of new parents, hearing the words Short Bowel Syndrome will sound a whole lot like a foreign language at first. Short what? Bowel? Huh?
The initial shock of any diagnosis that impacts your child can be a lot. But, you are not alone. As you take a moment to wrap your head around what the future might bring, here is some insight on raising a child with Short Bowel Syndrome while keeping your marriage alive and well.
3 Keys To Working With Your Partner
#1 Breathe
First and foremost, relax! You have each other and, therefore, you will be okay. Short Bowel Syndrome is a complicated disease state. But it is not the end of the world. Yes, your child will require a bit of extra attention and a lot more visits to the doctor. But you and your partner have a lot of love and care to share. Not to mention, you will be so in love with that baby, these extra responsibilities will feel like gifts in no time.
#2 Communicate
When it comes to managing Short Bowel Syndrome while juggling a marriage, communication is going to be everything. You will both be tired, overwhelmed, stressed, and anxious at times (sounds a lot like every other marriage I know). Talk about it! Do not shy away from using your words to express how you feel. Without communication, both sides will feel as though they are fighting an uphill battle alone. Remember, you are in this together and teamwork is going to make the difference between success and failure.
#3 Divide and conquer
There will be a lot of things you and your partner do well respectively and better than the other. There is a lot of value in identifying those strengths and weaknesses early on. For example, one of you may be better at handling the clinical responsibilities and communicating with providers, while the other may run a tight ship at home and keep supplies sterile and organized. You are not superhuman and do not need to be. Working to divide those responsibilities will not only ease the stress but allow you to accomplish this together.
Every Marriage Requires Work
With or without Short Bowel Syndrome in the mix, marriage is an easy thing to let slip aside. Date night, long walks, romantic gestures… Ask any married couple and they will tell you how easy it is to push them to the back burner. When life happens, love (especially with those closest to you) tends to fall by the wayside. This is normal.
For parents navigating Short Bowel Syndrome, those extra responsibilities and doctor visits will likely fill in the extra space or time you would have typically found yourself saving for one another. That is okay. It is still important to set aside time for one another.
Navigate The Added Pressures of SBS
There will without a doubt be a lot of stress. From the physical, emotional, and even financial pressures that come from Short Bowel Syndrome (or any rare disease state), keep yourself level-headed. There is absolutely nothing wrong with both making time for yourself and taking a break once in a while.
When the baby is napping or your kids fall asleep, take some time and go for a walk, hang out with a friend or even break something in the garage if you need to! It is all okay and important to keep that stress at bay. The last thing you want to do is find yourself lashing out or taking that stress out on your partner.
Be Each Other’s Biggest Supporter
Empower and encourage one another. It is easy to get down on yourself as life becomes more complicated. You will be sleeping less, eating more, and probably not feeling as great about yourself as you did before you got married. That is normal and par for the course of any marriage. It is important that you encourage yourself and your partner to keep a good attitude.
Right now you are investing in a solid future for both you and your family. This is the time to put in the work and before you know it, you will reach your goals. Do not be discouraged by the additional stress or overwhelm that comes with getting older together.
Lastly and most importantly, remember you are in this together! You worked equally as hard to bring this baby into the world and it is your responsibility to work together to help them thrive in it. Yes, Short Bowel Syndrome will make your job a bit more difficult but the strongest advocate a child will have throughout their early life is their parents.
Each child (especially yours) is a gift and you have an unbelievable opportunity to share that with the world. Working together, sharing responsibilities, and communicating effectively will make this extra set of responsibilities, a routine and show you how much of a blessing it can truly be.
